So, took Sebi to the doctor today.
Contrary to my anxiety ridden, sleepless night, tossing and turning, thinking the world is about to come crashing down thoughts…
He’s gonna live.
His cholesterol is high. We knew that before he went. Other than that, he’s really doing well. There is a little regurgitation in his mitral and tricuspid valves, but that’s minimal at this point.
However, he can’t make up with Little Debbie. The doctor agreed with my dining choices for him.
OH…and BEFORE I went to the doctor with Sebi, this is how our day went:
0632: Sebi: “Honey, you said to wake you up.” Me: “I’m up. Can’t you tell I’m up?” Sebi: “No, not really.”
0634: Sebi “OH $%^%#$!” Me: “WHAT? OH %^#&#^!” (our beloved Jack–sometime in the night–unhooked his feeding tube. He was swimming in Pedialyte, precipitating a very early bath for him. And we all KNOW how much he loves water…)
0740: Leave house to head to Jack’s neurology appointment
0815: Arrive at hospital. Jack has screamed the whole way in the car. He claims I was singing, which I was not. However, today, singing is the last thing in the world that he wants. And, I think he was talking to an invisible dinosaur as well. He begged not to go in, because he wanted to go to the “girl doctor” who has the “tweasoo chess” (treasure chest).
0845: Appointment with neuro. Up some meds. Pray for the best. Legs still getting more rigid than we anticipated. Wait and see. There is some concern over his airway/eating–but there’s always been that, so that’s not really new. There is also some question as to why he seems to be doing worse gross motor wise than he was…appointment in August. Sigh.
0945: Break in the action. I think, “Gee wouldn’t this be a great time for me to run some errands and pick up things we need to go on our wild, outdoor adventure?!”
1000: As I drag the wheelchair out of the bus car truck, I reach down, fix the seat, get his seat belt situated, put down the foot rests—and I look up to see an old man staring at me. That was about the time I realized he was staring down my shirt. There has got to be a better way to do this!
So, as you can see…by the time I managed to get home, I was done.
Did I also mention that it’s 375 degrees and 130% humidity?
Soooo, how was YOUR Monday?
So, the doctor finally called us back. He upped one of Jack’s meds. Supposedly this is going to make a difference, even though we’re pretty sure it’s not.
Exhibit A: Jack goes to bed at 1930…and stays wide awake until 0145 when he gives up.
Clearly the meds are working well.
The Plea for Help:
People, I am pleased to announce that it’s that time of year again!
Can it be?
Why, yes, indeedy, it’s time for Heather to head to the Social Security office and redo Jack’s supplemental medicaid paperwork (golf clap?).
(for those of you new to this, perhaps you’d like to read this…)
Here’s my question: what is the dress code for such an important event?
I mean, seriously, my leopard print leggings are “so” 2009.
Yesterday was our regular, routine, semi-annual, bi-monthly visit with Dr. P the neurologist.
These visits are no longer entertaining for me. They used to be. You know, back when Our Little Enigma was…
This has never been fun. I continually have to remind myself that this is not a 5K we’re running, but a marathon, and we’re running for the life of our son.
We enter. They weigh him—and inform us he hasn’t gained a single pound since January 2009. 13 months. He grew a little teeny bit in height, but not anything in weight. We rattle off his medications. The nurse listens to his heart and lungs.
The Nurse Practitioner enters. She goes over recent activity—his compulsiveness, aggression, fears (irrational at that), etc. We discuss his lack of feeding. We go over his sleep schedule (we’re on night number 1257 of no sleep). She mentions that his left side is remarkably more rigid than it was in August. She leaves to go get Dr. P.
Dr. P enters. He’s wearing a blue oxford shirt, dark pants, and a red tie with dinosaurs on it. He’s gotten a new stethoscope, I notice.
Janson is in a corner in a chair playing her DS—training puppies or something. Sebastian is looking from me to the doctor.
He talks, and I just keep thinking: “We’re here. I hate this. Why? Lord, please make me a bird so I can fly, far, far away from here.” (I’m not even joking…I say that all the time.)
We discuss options.
He feels that Jack should be on some sort of a monitor (apnea or pulse ox) at night so we could actually sleep. I can’t sleep. I lay in the bed and worry incessantly that my baby is going to stop breathing at night, and I will wake up to no Jack in the morning. Maybe this is irrational in your eyes.
I would never forgive myself if I could have helped him…
Dr. P is planning on calling Dr. Lung and getting something set up. In the meantime, we’re at status quo. His disappointment in the way therapy is progressing was obvious. 2 and a half years of therapy has helped…some…but not to the degree that was hoped for.
We are here.Awake. Alive. Thankful. Prayerful. Hopeful.
I don’t know…I just don’t know. There are no real answers. I know, shocking. We spent quite a bit of time with Dr P this afternoon going over Jack’s mitochondrial test results. While he tested negative for the really bad kind, his blood levels indicate that he could possibly have one of the more rare breeds of mitochondrial disease. Dr P presented us with three choices: 1. Do nothing. After all, Jack will only be 3 in September and we could give him a little bit of time to grow. 2. Send him to Atlanta or Augusta for a muscle biopsy, because this is the only for-sure way to diagnose mitochondrial disease (which is why he wants him to grow, so we can eventually do this….)3. Send him to the Mitochondrial Guru in Atlanta who would do his own testing, and keep Dr P out of it. After some discussion, we’ve come to the conclusion that we’re giving Jack a much needed respite from testing for 6 months. His medications have been adjusted to hopefully provide him (and us) some much needed sleep, and we go back in the beginning of the year. I am not happy. While we feel that we are closer to an actual diagnosis, there’s a part of me that just wants to pull the covers over my head and pretend none of this is true. Dr P feels that Jack’s tremors will not ever be relieved by medication, and we should perhaps pursue the adaptive technology that Big G wants to get him (this is in the form of computers and touch screens–as he won’t really be able to write when he can’t keep his arms still). He also feels that Jack will be able to get lots of help when it comes to school…especially since it’s looking more and more like the feeding tube is going to be a permanent fixture in our lives…which breaks my heart into a thousand pieces. My feelings are all messed up right now, so I will end at that today. When I get a better grasp on things, I’ll be back. You can’t get rid of me that easily!
I know I haven’t written. I haven’t really felt like it. However, I am coveting your prayers again…although, I don’t know what exactly to pray specifically for, I still ask that you keep us close to your thoughts. So, here’s the latest. We went to the GI doctor last week (remember: he didn’t want to see me again ever!). We were there, literally, for almost 2 hours. We discussed everything…from the tube to what he eats to how he poops! After awhile, he sat next to me and told me he wanted to defer to Dr P (the neurologist) because he felt that Jack might be exhibiting signs of mitochondrial disease. Well, my heart went out from under me and she-who-can’t-get-upset-without-throwing-up nearly did. Why did my heart go out? Because at our last neurologist appointment, Dr P mentioned mitochondrial disease as well. [Allow me a moment to tell you about mitochondrial disease...DO NOT look it up! I'm telling you, it's devastating. However, there are many, many forms...some mild, some completely debilitating.]Anyway, we also saw the lung doctor last week. While at that appointment, Jack laid on the floor, screamed, and bit me twice. He kicked the nurse, kicked the walls, and tried to break out of the office 3 times. According to Dr L (and subsequently Dr P), this is not normal toddler hood behavior. I sure wasn’t laughing. So today we go to see Dr P. Sebi went with me (and just so you know, I am banning him from any more doctor visits. This is only his second time to go to the neurologist, and both times we got bad news! Love you honey!). Dr P came in and asked if there were changes, etc. We talked about his ugliness and about what Dr R (tummy dr) had said. He started typing away on the computer, writing down acronyms for diseases, etc. Sebi was trying to read over his shoulder and started going cross-eyed! Dr P asked questions, and said, “well, we have to get to the bottom of this and get a firm diagnosis.” He said something about making life easier if we had a solidified diagnosis. I don’t quite get that. I asked him if the treatment would differ from our current regimen, and he said no. I asked him if we had to do the testing. He said yes. Then I cried. A lot. So, we are having Jack tested for mitochondrial neurological gastrointestinal encephalopathy (MNGIE). It will take a long time (4-6 weeks) to get the results back. There is part of us that knows that we need to be to the bottom of his eating issues. There’s a part of us that just wants to run away and hide. It would explain a lot about his eating. And talking to Dr P, he said we shouldn’t push Jack to eat too much and fuss over the tube, because there are worse things than having a feeding tube for your whole life. Which I can understand, but it makes me really upset—and we can’t talk about that right now. This is where we stand currently. I will update when the test is done and we’re moving on. I know God has us held. I know God will get us through. More later, when I’m more comfortable with talking.
We got here and got registered…everything was fine. They sent us to neurodiagnostics, and there was not one soul there! We waited, and finally some lady came and told us we were not where we needed to be. When they FINALLY got us to the right place, Dr P was there (we didn’t actually expect to see him today) and he said he wanted to see what was going on with his main man! Can I just tell you how much I love this man!
It took 3 tries to get his IV (at that point, even though I am a nurse, I wanted to cry too…). However, once the IV was in, Jack spent some well deserved time in la la land! They let us stay with him, which was awesome! The hospitalist knows me, so she was really good about letting me help! I liked that! Of course, my helping was basically holding Jack and saying all the right Mom phrases…” I love you baby…” “it’s OK baby…”Anyway, she was telling us about a study that came out saying that there was no connection between intra-uterine cocaine exposure and later brain development…evidently she feels strongly on this, because she said when she was at Emory, she was interviewed by CNN and she told them she thought that study was full of poo.
He woke up fairly well. He’s a little grumpy and demanding, but he’s still really groggy. He’s less than pleased with the IV…and when he realized that the giant bandage on his head was NOT HIS hat…um, it wasn’t pretty. I just put the hat over the wires. Life is still not peachy.
So, he’s in his bed, with Wall-E, and his wires and his big box of wires and batteries…all while being video monitored. He thinks it’s funny to see himself on the video…I think it is a little creepy.
AND—Thank you ALL so much for sending him e-cards…we got 10 so far–I cried. I think that’s so nice! And we love you all so very much…thanks for thinking of us, and for praying, and for taking the time to sit down and email us today. It helps more than you know!
More later…when we have any more news!
Jack will be admitted to MoMo on March 26 at 8 AM. Evidently, we will go get settled in then they will take him down to the EEG lab and get him all hooked up and sedated. Then he comes back to the room and we hang out for 24 hours. Then, we go home. I just spoke with them and we have to hold his tube feedings the night before. When we get there, they will make him loopy with Versed and then put his IV in. After that, they knock him out and then glue the wires to his head. She said he should only be out for 30 minutes or so. Then we’ll go to our room. He has to stay in the bed laying down for 24 hours (can they just sedate him for that WHOLE time?)…she said to bring any videos or whatever to keep him in the bed. I feel strangely sure that we will have several showings of Wall-E. At least I can also take my computer so we can show him games and stuff too. And, when we get back to the room we can start his feeding so he can at least not be too upset. I might have to call upon my Savannah pals to bring french fries all day long! That’s it for now…the sedation nurse is supposed to call me to tell me what I am supposed to do regarding his medications (if they might have a bad reaction with the sedation—I asked the EEG lady what sedative they use, but she didn’t know. She also told me that I couldn’t give him his meds. I asked her who could? She said,”Only a Registered Nurse.” I said, “Oh good thing my license number is RN&%^$*.” She said I could take it up with Dr Pearlman. I told her not to worry, I would. The last time we were there I watched nurses make him bleed because they put a NEEDLE in his IV port! All she was supposed to do is flush the line. I was less than happy.
I’ve neglected writing..and I’m sorry. I do have valid reasons. Reason #1…we kept our nieces for the past 4 days! It’s been a little busy around here! We had a ton of fun…there were games and trips out and about (and my youngest niece slept on top of me for 3 nights….). It was so good to have all the kids together for more than just a passing visit!
OK..now, with that all said….
Jack’s sweat test came back within normal limits. Thank goodness. Unfortunately, this means that we have to come up with the source of aspiration…is he still aspirating even though his swallow study was OK, or has his surgery failed? So there will be more testing and more waiting. I do think if they could get to the bottom of all this he might actually EAT—and then we’d be making progress!
Today we saw the neurologist again. It actually went better than I had anticipated, being that I had the nieces and Jack with me (I took Sebi with me. He didn’t have a choice….). Dr P witnessed Jack and all his aggressiveness. He was in rare form! He changed his medications all around again. He decided to order an overnight EEG on Jack. This is a test to see if he is having seizures. They glue electrodes to his head and watch to see if any part of the brain is firing abnormally. Unfortunately, they will have to sedate him to get this done. No date set yet. It is however going to be at MoMo, so we’ll be there with all our friends again. Big Sigh.
So, afterwards, I was discussing with Sebi the possibility that maybe we should go ahead and shave his head again. As much as Jack HATES (and even that is an understatement) water, I can’t imagine picking the EEG glue from his head. I have a hard enough time with it when my grown patients need help! Anyway, I shaved it. Sebi was very much anti-shaving. I’m in the doghouse. I think he looks adorable. And besides, he wears a hat every single hour of every single day!
That’s it from here for now. Will let you know when the test is. Good news…we’ve already met our deductible for the year!!!
We’ve had a day!
Let’s paint the pretty picture…first day back to school (not too much drama this morning–she was pretty good about it). First day back to therapy–Jack decided that he wasn’t feeling quite up to therapy today. He pitched a royal fit and refused to even look at Wendy the Wonderful. His legs are somehow worse than they’ve been in awhile. He fell on the treadmill and just trying to walk a straight line…several times. He fell with me 3 times just trying to get in the door!
Then….we had our neurologist appointment. It didn’t start out well. The receptionist stole my insurance card, and when I went to ask for it back she said, “I don’t have it!” I said, “yes you do, I see it right there!” She says, “that’s not yours!” So I grab it and say, “well, I’ll be doggone…my husband must have another wife!” I got my card back. So I went and sat down…a little bit later, a quite exasperated nurse calls us. She asks why we’re in the wrong office. I said, “nobody told me to go elsewhere!” The receptionist took that moment to speak up and announce that she told me where to go and I didn’t listen. I bit my tongue hard because I was about to tell her where she could go too!!! I know that isn’t nice, but I’ve totally had it!
So we get back there and Jack is weighed and measured and all the bells and whistles blow—-oh he’s so small and skinny and his head hasn’t grown…all the stuff we already know! Dr P has hired a nurse practitioner, who is GREAT! She came in (he must have sent StoneFace the Resident back off to Emory) and talked to Jack and me and said she’d be back with Dr P. They both return and Jack is happily spinning the chair in circles. He’s been doing that since we walk in the door.
Dr P asks how the new meds are working. I tell him clearly not well…as evidenced by the incessant circles we’re making, and GOD forbid we stop him! Then, Dr P made the fatal mistake of asking about Jack and his hats. I told him that the hats have been like his skin forever! He said he didn’t see a hat the last time (and truth be told, he had the hat off when he examined Jack last time, Alissa had pictures). I didn’t know this at the time. I said, “I’m sure he had it on…he sleeps with it on, we go everywhere with a hat!” So we’re laughing and he says to make sure I buy lots in case we lose one—blah, blah, blah…then, he reaches over and takes the hat off of Jack. WHY????!!!! I don’t know…I am not responsible for the reaction. Yet I am. Jack turned, lunged, and began pummelling Dr P. When Dr P didn’t give the hat back, he bit him.
(At this point, I think I had an out of body experience. I was secretly praying that the Rapture happen. RIGHT THEN! Lord, Please, come get me! Then I kept thinking, OH Heather, please grab the baby! Reality struck me….) I grab Jack, and had no clue what to do—I grab the hat and put it back on him, and he’s sobbing, and sobbing….
We got a new prescription. And, we were told if it doesn’t work pretty darn quick, to call him, and he’ll change it over the phone—no need to have another appointment next month. He’ll see us in March. Hopefully, by then, his wounds will have healed.
So, now we’re home. And I am watching him sleep. He seems so good when he’s sleeping. He seems very normal. I feel like the bigger he gets, the less control I have. Dr P said that kids with cocaine have a real hard time with consequences—they lack the ability to understand. And it’s true. I know…and it’s becoming more and more obvious that Jack isn’t “normal”. He’s not developmentally on target at all. He still can’t sort shapes very well. It’s just too much…I don’t want to talk about that…AND–as if that wasn’t enough! First, Jack’s Durable Medical Equipment place (where his tubing supplies, and food comes from), called and said that we don’t have insurance. Which is crazy, right? Well they eventually found out we do have insurance, and, in fact, it’s the same insurance we had a week ago when they looked it up–it hasn’t changed in 11 years! However, because it’s the blessed beginning to a new year, we owe them $1003 before they will deliver his supplies. Never mind that he will die without them. Pony up the money and do it today. So, I am in a bad mood and I just want to cry.
Yesterday was Dr P, the neurologist. I got there, and they handed me this 7 page form to fill out—something about they have to do this every year—and they gave me the one I had previously filled out (which was hilarious—I read it and realized just how LITTLE I knew about Jack when we first went there!). It was your typical age-name-date on the first page. Then I flipped the page. When I flipped that page, Alissa called. So I am giving her directions on where to meet me, and telling her about this form. I started giggling when I read the question, “Medications used during pregnancy(mother)?” I wrote “cocaine.” And I told Alissa this–the lady next to me almost fell out of her seat! I started laughing so hard! I guess I have gotten to the point where you either laugh about it, or I’ll cry all day long—I choose to laugh. Although, there are days when I cry, but that’s another story. So, Alissa and Ella arrive to support us, and we get called to the room. After a few minutes of behaving, two 2-year olds were done. They, OK…Ella listened perfectly. She would look out the window and we’d talk. Jack, on the other hand…he tried to use the doctor’s computer, he banged his head against the wall several times to make sure they knew we were there, and he bit Ella. And when I say bite, I’m talking we could count the teeth on Ella’s back. Yep, her back. At that point, the doctor enters…Or not. It’s not Dr P, it’s his resident. I don’t even know what her name was. She basically let us read our list of questions, listened to Jack’s heart, and said, “OK, well, I’ll go talk to him and I’ll be right back.” She leaves, chaos ensues….Enter Dr P and the Resident. [Pause for a brief explanation---have you ever taken your kid to the doctor, KNOWING they are sick, and suddenly they act like everything is OK? That always infuriates me, and makes me feel like I just spent my co-pay on absolutely nothing. Thankfully, Jack pulled out all his neurological tricks and frightened us all (kicking, banging, screaming)--along with the Resident. I don't think anything could scare Stone Face (Dr P).]I would ask questions, and he would not answer my question…Alissa would then rephrase the question, and he’d answer her. It went on like that for a long time. He feels like the feeding clinic is maybe worth only the evaluation. He said he’d go to Kennedy Krieger (at Johns Hopkins), but that’s him. He said Marcus is OK because they’re based on Kennedy Krieger. He said the evaluation may be able to tell us if this is a life-long problem or just something Jack can overcome. Then we talked mostly about seizures. He wanted to put Jack in the hospital overnight and see what happens and run tests. Alissa spoke up and told him (and I say GO ALISSA!) that Jack’s spent too much time in the hospital couldn’t we try the medication and see if it works—if it works, clearly we’ve fixed the problem. He said we could negotiate–we have to document every seizure for a month and then go back to see him. He also talked about Jack’s aggression issues/affect problems. He said cocaine is linked to lots of stuff, but there’s not enough research to tell if it effects this and that…I was zoning out on that conversation because Jack was underneath the table, kicking the walls. He then told us to try this other medication for the aggression. He explained Jack like this: He said, Jack is a toddler. Toddlers have tantrums. Jack can’t stop at tantrum, he goes from 0 to Monster. (the doctor didn’t say 0 to Monster, that was all me) He said he just has no control over emotions. Which is true, but I didn’t like hearing it. OK so while the Resident was there, I looked over her shoulder and the paper for Jack has 3 diagnoses on it:1. Infantile Cerebral Palsy, unspecified.2. Dysphagia3 Pervasive Developmental Disorder; childhood behavioral psychosesI almost die. PSYCHOSES! when Resident left, I tell Alissa, who cries. Which makes me cry. So we ask Stone Face and The Resident about it. Resident rolled her eyes. He said some junk about it being a coding issue. Well, I didn’t want to hear that…when we picked up Jack’s medicine from the pharmacy, the first line of the information says, “This medication is used to treat schizophrenia….” we had a good laugh at that one! For the record, Jack is not psychotic, he is merely special! And evidently quite the Enigma!