Jack had his big bad Nissen test on Thursday.
Upon arrival, we were met with the usual—”There’s our man, Jack” and other such greetings. It’s really awesome that he’s so unforgettable, but I’m not a fan of him being Mayor of the hospital.
After we checked in, got his magical bracelet, and shuffled down to radiology, we got put in a room. They wanted me to change Jack in to a hospital gown, which was about as much fun as wrestling an alligator rubbed with Crisco. Once he had been appropriately reprimanded, threatened, and put in time out approximately 98 times, he was ready to start the test.
They loaded Barium Boy with his favorite element. And we watched the screen. Jack actually thought that part was cool. He liked seeing him tummy on TV!
We tickled him, rolled him around, bounced him—and then, there was a little regurgitation in to his esophagus. Just not enough to say his Nissen is failing. The radiologist looked at me, looked at Jack, and looked away.
We all knew this was not the news we wanted.
I mean, I wasn’t a huge fan of having him have another major surgery.
But, the fact that his Nissen hasn’t failed means only one thing: he’s aspirating on his own secretions.
He is so talented, dontcha think?!
This is actually really not a good thing.
No parent should have to choose between a decent quality of life or a longer quantity of life for their child.
Non hated–even hate isn’t a strong enough word–Jack’s feeding tube. She would ask me constantly if we could “get rid of that thing” yet.
This would hurt her heart.
It sure hurts mine.
Jack says “truck” by substituting the tr- sound with an f. My niece says “faucet” my making the c sound hard like a ck. And I say reflux, like it’s the worst word ever.
Because, it is.
Jack saw Dr. Lung this morning. His recent testing from last month shows us that he’s probably aspirating more than ever, and also that he’s refluxing. A lot.
Which means that his Nissen probably has given up the ghost.
Which means we have some decisions to make. Decisions that I don’t want to make. Decisions I wouldn’t wish on anyone.
Her big concern is that, not only is he refluxing, but she feels he’s aspirating on just his own saliva. Not good. Really not good.
Thursday, bright and early, we are heading to MoMo. They are going to do an upper GI and a barium study (he’s going to be so happy to eat barium! He just loves that stuff!). If it shows that his Nissen is failing, we have to choose to either re-do it, or let it be. If we let it be, he will probably be forced to only eat pudding thick liquid the rest of his life. If we choose the surgery, there is no guarantee that it will even work….again.
So..that’s where we stand. Today.
Hopefully, I will have a better attitude tomorrow…after some retail therapy. I mean, the kid has to look cute at the hospital!
What a week we’ve had! My foot—is fine. Sort of. It will be fine. In 6-8 weeks while wearing sneakers. Anyway, Monday I took Jack to therapy. I was barely to my car and Jenny called to have me come back. Jack was having serious tremors and couldn’t stand still. I have seen this a lot over the past few weeks, but the past few days are the worst ever. He’s having trouble holding things, he can’t sip from a straw anymore, and his gait is much like a Weeble Wobble. So, I called Dr. P(the neurologist)…THEN, we had an appointment (still Monday) with the Lung doctor. She says his lungs are shot. As if that was a surprise! So we have to keep in on the oral medicine and the nebulizer medicine daily….like forever. She is also having him do another swallow study next week. She feels that Jack is still having major reflux issues. So, we’ll get to the bottom of that once and for all. Jack will love it—another chance to eat barium!!! OH, I forgot—while she was looking at him, she told me she thought he had strep throat. She took his temp and he was running a fever, so…We THEN drove (yep, still Monday) to the far other end of the universe and saw the pediatrician. Mr. Jackpot was NOT happy. He was less happy after the strep test! We came home with plenty of prescriptions!Tuesday, Jack got fitted for his new braces (yeah, the respite from braces is over. I was sad too). He was not really happy about that either. He kicked a lot—Jack was on my lap, and Mr. J had Jack’s foot in his hands. So, if Jack decided to kick REALLY hard—yes, that’s where Jack kicked–I am really sorry Mr. J. So yesterday, we saw Dr P. Let’s start with the EEG. It did not show any real seizure activity. However, the EEG is only between 80-90% accurate. He witnessed Jack’s tremulous self. He scratched his head. I cried. He said that this is not a medication issue (especially being that Jack is the Super-Metabolizer). He used the word “enigma.” He wants to rule out everything before we just throw up our hands and say “this is just Jack.” This tremor thing is really bad. He’s having a lot of trouble with it. It makes me really sad to think that this could be Jack’s “normal.” So, we’re having a CT scan—hoping for? I don’t know. I don’t know what to hope for anymore. Do I hope there’s fluid in his head? Do I hope there’s a cyst? Do I hope that there’s some other disease process going on? Do I wish that none of this was happening? Do I want to run away with him and hide? Anyway, no matter what I wish, his CT is on May 6. And, if the CT shows nothing, then we tweak meds and hope we can control Jack’s lack of control. However, we are planning a weekend of fun and sun! We are meeting Mel, Pat, and Kristina in Jacksonville for Perapalapalooza! HA! Anyway, we’re taking the kids to the zoo. I’m excited. I’m really excited to see them and talk and just be together. Pictures following—as if there were any question about that! Please just keep us in prayer. We could use some lifting up from time to time. It seems like there’s never good news. Or if there is good news it’s peppered with “but, ….”
Well…let’s catch up a bit…Janson:She went to the ear doctor on Tuesday and he put her on antibiotics and said he can’t see what all is going on in there until we get some of the blood out and get her cleaned up. So he poked and prodded and—we go back in a few weeks when he can get a better look. The dentist went really well! She didn’t cry at all, and the dentist still has all his fingers! However, she arrived in my bed at 4 AM this morning with a nosebleed…the tell-tale sign of a sinus infection. So now she has MORE antibiotics! We also went to her school and met her teachers for the year. I think she’s going to be really happy this year. Her teacher is super wonderful, and they are going to be reading a lot, so Janson is very, very happy! Jack-o-potamus:The swallow study went pretty well! He is still allowed to eat, we just have to keep an extra close watch on him. Liquids are still not great, so we still need to thicken his water. There’s no real end in sight for the feeding tube. He doesn’t eat enough to take the place of the calories he gets from the tube, so it stays. But that is OK. I’m just really happy that they didn’t take his eating away again…I don’t think he or I could take that this time! So, that’s it for now. My babies have their birthdays next week, so we’re in full on Birthday Mode! Will post pictures when it’s all said and done…and also after the first day of school!
Well, well, well….So, I told you he was eating and life was fabulous, right? Well, not so much. Last Sunday night we spent the majority of it in the MoMo Emergency room. Jack spiked a fever of 105 (YIKES!) and I couldn’t get it down for anything. They saw him, ran tests, and were set to send us home—but his fever spiked again, so they made us stay. They drew blood and made us give him a bath (oh, yes, that went over really well…)…eventually we were allowed to come home with a double ear infection and the beginnings of bronchitis. Is it due to him eating? I have no clue. So, this week we are having another swallow study to see where we stand. Pray he does well and they keep letting him eat, because if they say he can’t, I will cry. Now, today…Janson woke me up (which is never a good thing) and showed me her ear was bleeding again! So, we’re off to the surgeon tomorrow to get it looked at. I can’t believe this! She also has a dentist appointment this week—and if you have ever heard about Janson and the dentist, you know this is going to be rough. (The first time we had her to the dentist, she bit him…and we were asked to leave and not come back) However, like a good mother, I have threatened her existence if she embarrasses me or bites, or kicks, or does not behave exactly like she should…pray for us all! AHHHHH!In other news and notes:Brian is doing great. He had the surgery and he’s doing SO much better! Life is back to normal there! Yesterday, Alissa and I had planned a surprise party for her sister’s baby’s first birthday. I was supposed to be the decoy person to get Julie out and about. So we go out and play for awhile and we come back—chit chatting and laughing…and we get to the front door. She’s about to knock and every one’s standing to yell “Surprise!” and I noticed a little snakey poo about to cross Julie’s foot. So I started screaming, “SNAKEEEEEEEEE!’ and they throw open the door to me running away and grabbing Julie! I totally ruined the surprise, but I was not about to stay in the vicinity of any snake! I think that’s about it from here…we went school shopping today for J. She goes back next Tuesday. I can’t believe how big she is…she actually has an opinion all of a sudden about what she likes and doesn’t like—from pens, to colors of binders, to shoes….but she picked very well. She’s definitely a product of me and Veronica…solid colored tops, pants, cute shoes! Will let you know tomorrow how J makes out at the surgeon!
Yesterday at therapy, Wendy the Wonderful, was mad. She was mad that Dr R didn’t call any of us regarding the swallow study. So, she called him herself. And she spoke to him—and made me an appointment for today! Gotta love efficiency! Anyway, today was also RSV shot day. We sat in the waiting room forever, and we met a nice lady who had a 9 month old with a feeding tube. Only, her daughter just refuses to eat. There’s nothing really wrong with her, she just has no desire to eat. (sound familiar Vero?) Anyway, we talked and then—-I asked her if her daughter received Feeding Team therapy. She put her hand over her mouth (very Scarlett O”hara like) and said, “there’s Nothing WRONG with my daughter, she doesn’t need therapy….is there something WRONG with him?” He went from being cute, adorable Jack with the Feeding Tube…to Oh No There’s Something Wrong With HIM! So, being in a bad mood as it was, I told her the WHOLE story. And made her feel like poo. Then I felt a little bad so I apologized for being rough. Then she got up (yes, true story here) and she MOVED across the room! This man sitting on the other side of me reached over and patted my hand and told me “well done honey!” So they finally called us back and I was still fuming. They measured him (STILL 30 inches tall) and they weighed him—10kg. He lost a little weight. He was 10.5 last month. So, in pounds, that’s a little more than a pound that he’s lost. (keep that in mind for when I talk about Dr R’s visit) Dr L came in and examined him and said she wants to check his lungs via chest xray next month and see how his lungs are progressing. She agreed with the swallow study results (which I am carrying with me to show anyone who doubts the results) and said not to feed him by mouth. Then they shot him. He screamed, we left. …to frantically drive to Dr R’s office. Which I arrived to with 3 minutes to spare! Dr R’s nurse came for me and said, “oh my, he’s getting to look more and more like his dad, don’t you think?” I didn’t know what to say. I felt like laughing (and in fact I got the giggles)…and I felt like saying, “No–do you even read your charts!” But in the end I said “No, actually I don’t see much of Sebastian in him.” Then I laughed. A little too awkwardly. But it was funny! So she had me strip him down and we weighed and measured him AGAIN! Their scales said he’s lost an entire kilo (2.2 pounds) since his last visit. And he hasn’t grown. Dr R comes in—not being his usual happy self. Must be a bad day, I think. After I told him all I needed to: he screams for no reason, he throws up his tube feedings, he has hiccups all the time, he has yet to sleep through the night, and he’s been on every reflux med on the market–he said Jack’s on probation. He said he wants to try another round of meds and if they don’t work, they’ll do a Nissen Fundoplication to stop the food from coming back up. That’s a surgery…you can google it…it’s too much for me to type right now. But basically it fixes the reflux by wrapping part of the stomach around the esophagus. I called Wendy when I was done….she thinks we should just do the surgery and get him fixed. She has little hope that the meds are going to work. I guess we’ll see, huh?! OH, and we need to not worry about the weight only he can’t lose anymore. Makes no sense to me. “Don’t worry, but don’t let him lose anymore….” How do you not worry????
First…Happy 2008! We spent New Year’s Eve with some friends….and actually, we missed midnight. Someone (who might that be?) sat on the remote during the news and paused the show. When it came back on it was 15 minutes behind. At midnight, Alissa called to yell, and we realized we were off, but when we turned it back on, we accidentally hit the LIVE button and lost the Ball Drop. So we went outside and blew up fireworks that Sebi and Brian bought at South of the Border!
There is news and it’s not really great.
First, Jack has been banging his head for some time on whatever he feels like banging it on. However, he has begun to really bang–to the point of bruising–and he’s even doing it in his bed at night. He’ll stand up and do the Nestea Plunge anywhere—concrete, tile, carpet…wherever. So, he did this at therapy on Monday, and they ordered him a helmet. Nice, huh? It’s red.
Today he had a swallow study. Again, not good. They began by giving him sips of the consistency that he drinks currently, and it was quite apparent that he was aspirating with nearly every swallow. So they gave him liquid the consistency of pudding and it was better, but still he aspirated. Finally, they tried a cheerio. Well, 5 cheerios. The first one he swallowed whole. The next 2 we gave him together and he seemed to do OK…the 4th he swallowed whole, and the 5th…well, he choked on it, and threw up all the barium along with the other 4 cheerios. So, no more cheerios. Actually, no more food period through his mouth. The radiologist was calling Dr R when I left.
But wait…there’s more.
While they were watching him swallow, they discovered a problem in his lower esophagus—this has nothing to do with his ability to swallow. Either his esophageal sphincter ( the muscle that opens at the top of your stomach to let the food in) is not working properly, or he’s refluxing the majority of his food (contributing to more aspiration possibly). That’s why the radiologist was on the phone with Dr R. They are contemplating either doing a pH probe (that’s a test where they put a tube through his nose that goes into his tummy and they monitor the pH level of his stomach secretions for 24 hours to determine if he’s got reflux really bad) or an Upper GI study (which is basically like a swallow study only it looks more at the stomach rather than the swallowing).
So, for the minute, we are only tube feeding him. If they discover a problem with his tummy, they may do surgery to fix it. Until then, we are just praying he stays healthy. I will keep everyone posted.
Incidentally, the radiologist was really, really nice and he said “how could anyone be mean to such a cute baby?”
My response:”I don’t know, but I would love 10 minutes alone with HER to tell her what she’s done!” Bitter, no—angry, yes. Sometimes, I daydream about having that conversation…sometimes that daydream alone makes me work extra hard for Jack.
And, in case you hadn’t noticed, he’s really cute! And, into everything! Or stuck behind everything…
So here we are…a week before Christmas, when no one has anything to do…Jack’s got pneumonia again—and to top it all off his ears are infected. He’s all full of fluid! The doctor said we need to monitor him closely, because if he’s not better, she’ll hospitalize him. Isn’t that wonderful!??? He’s NOT eating ANYTHING by mouth until after January 9. They are doing another swallow study to see why exactly he is continuing to get pneumonia….the theory is, he is still aspirating even though we have been carefully offering him bites. He’s had a fever of 103-104 since Sunday. Poor thing is miserable. The doctor said we should all be thankful that he has movement and stop focusing on feeding him orally, since obviously that is not appropriate. I totally agree. So that’s where we are today. Hopefully, he will react well and he will have some relief soon. Actually, I am really upset. More angry than upset. I don’t want to hear about how poor Jack needs to be fed. That’s why he has the tube. That’s supplying his nutrition. He’s alive! He’s mobile! That alone should be something to give thanks for….eating is not a priority right now…not if eating could kill him! Anyway, please pray for us….right now, Christmas is looking a bit rough around the edges for us.