Wednesday, January 30, 2008
Tonight he's been pretty fussy on and off. He acts as though he's starving, yet you feed him and he barely eats a thing. Then he'll cry. So I wrapped him up good and tight and he's down right now. Tonight I have him in the bassinet beside me elevated on a pillow inside to keep him up.
Dr Unger said he wants Griffin to see Dr Pelinka tomorrow to follow up and so she can see how he's doing. I said "Tomorrow!?" and he said that with his history, this virus, things can turn south fast. So ... I guess we'll be going back to the doctor tomorrow. *sigh*.
If this turns out to be a bad illness, like if Griffin ends up in the hospital, I think I'm just going to take Maysen out of school until next fall. I can't jeopardize Griffins' health anymore - and that school is filled with nothing but illness right now and will be until late spring. I can't do this every couple of weeks. Our hands are all cracked with dryness due to washing and in our little 1400sq ft house with it frigid outside, we're all bound to share germs, despite our efforts.
Tuesday, January 29, 2008
His tone looked great! Last time his legs weren’t spontaneously kicking around, and this time they were, so she was encouraged. At home, he totally can do the things they look for - lifting his head, attempting to roll over, kicking legs all around. So, I asked if sometimes babies are just “that way” without any neurological problems. She said absolutely – her son was that way. So these “slow tone” in his extremities might not mean a thing! I had decided I would start video taping him and his responses (such as him moving his legs, lifting his head) because those are things they look for at OHSU and I am scared we get up there and Fin’s just relaxed and doesn’t do those things – then they’ll think “Hmmm, slow tone!” I got our hotel reserved for the night before so we can take things slow the morning of the appointment and no stress that day.
Dr Pelinka will be out of the country from Feb 8-18 so she won’t be directly involved with OHSU while that goes down, but Dr Herbert will be. She was the one initially who admitted Fin and was involved in his care at the beginning so we’re pretty involved with her, too, and comfortable with her handling things once we go until Dr Herbert comes back.
So my last post explained that Maysen was throwing up … well, Sunday night Nathan got sick. He took off Monday to recoup and also that the weather wasn’t so great to travel into work in the morning. Last night at 3am I woke up throwing up and was stunned when Nathan said he’d stay home from work again today to take care of me and the kids. I’ve slept much of the day and am starting to feel better. I’m tempted to keep Maysen home this week to get him (and everyone) well. If he brings another virus home I’m going to die…
I’m starting to help my sis-in-law with the Cr. Christian School auction that she puts on every year to help raise money to build a new building. It’s my first year helping and my task is getting the catering all figured out. So that’s my plan this week.
Hope everyone is staying well…
Sunday, January 27, 2008
So, Nate and Maysen got out there and made the much-anticipated snowman today. We named it Big Booty Snowman as the rear end was rather large.
The neighbor boys came out and Nate had a good time playing snowball fights with them. Later, the neighbor hunter came out with his 4-wheeler and pulled the kids on sleds. Because of our recent bout with illness, Maysen was only out for about 30min but we watched the festivities from our front window.
Much concentration goes into making a tiny snowball with mittens on....
Mmmmm ... snotty nose!
So, right now the snow has stopped and all 3 of my boys are sleeping. I’m going to take advantage of the remote control now, curled up with my cup of General International cup of French Vanilla coffee (hey Scovil Family – I’m actually drinking COFFEE! It may be completely filled with sugar and flavored but it’s a start!)
Saturday, January 26, 2008
"I should have listened to my gut instincts, now I'm stuck!"
"Hmmm, now what?"
"....if I yank here ..."
The saying is so true: When it rains, it pours. Last week Maysen contracting a virus causing runny nose, cough, etc. I contracted it through Maysen, but has left me with a very painful throat and right ear that I’m sure has some infection in it. Been living on Motrin lately. Last night before bedtime, Maysen came out saying “My tummy doesn’t feel good”. Thinking it was some big ploy to stay up longer, I disregarded and sent him to bed. On our way to bed, we checked on Fin in his room and upon walking down the hall, smelled something “not right”. Upon further investigation, discovered Maysen had thrown up in his bed, turned around, and went right back to sleep. That took major undertaking of the bed apart to get clean. At 1am while feeding Griffin, I heard him start to wimper and decided to bottle prop for a second and check on him. He met me in the hallway throwing up. It was a long night, to say the least. We were supposed to have Nate’s brother and family down for the 2nd weekend in a row, but both cancelled due to sick kids. Will it ever end?? Maybe they’ll get to meet Griffin when he’s 6mo old in the summer when all the bugs have gone away…
Blog wouldn’t be complete without uploading some pictures of Griffin. Mighty handsome boy if I do say so myself!
Thursday, January 24, 2008
Griffin's sick now. Nothing huge, but this morning after his bath I realized that he was pretty snotty - and only got worse today. He's not really coughing, no fever, and eating OK so he's doing OK. I'm just thankful that I knew his immunity studies are all back and all OK so I don't have to worry about if this virus will put us back in the hospital.
Had to take Bailey (our doggie) to the vet today for a cyst on her paw. The vet said she'll have to surgically remove it. Why not one more thing!
Learned today Nate's mom is going to come to OHSU with us for Fin's consult. I'm glad she is - it's been nice having her so involved. It's very ... comforting. Not having my own parents close and able to be so involved, it's comforting to me to have that parent-support from Nate's parents. It'll be nice having one more set of ears and questions up there with us.
Off to the hot tea I go ... my throat's been killing me today. And for those keeping track: Maysen told me twice today he had to go to the bathroom! Totally on his own. "Mommy I need to go potty." He even told me he had to poop --- and did!! I have to thank the Lord for one relief.
Wednesday, January 23, 2008
I don't feel like I can keep up with anything. I can't imagine working fulltime right now. Just when I get something cleaned up, something else falls apart. As I sit writing this, Mase just walked around the corner, naked and wet, stating "We're taking a shower!" He meant him and 4 stuffed animals. I "just" cleaned up our laundry room floor - damn the sock that ended up in our draining sink - inhibiting it from draining. I guess my floor got a good mopping!
And now Fin is ready for another feeding. The good news: Fin slept in his crib last night for the first time. He woke up ONCE to eat at 2am and that was it. Of course, since tonight is my night, everything will fall apart. 2 nights ago when it was my turn, I got 3hrs of sleep. Fin did really well, but Maysen is sick so keeping him from coughing out his lung was a struggle. Do you think Nate just sleeps through everything? Because I have yet to get a night like that ...
Crying boy ....
Monday, January 21, 2008
Fin had his appointment with Dr Pelinka today, too. He’s still doing really well. He’s gained just a smidge over 7oz, weighing in at 9lb 2oz today. I was concerned that he was “snacking” too much and not really eating, but apparently not! Dr Pelinka was going to follow-up with OHSU this afternoon to see about if we could move his consult appointment date up, and if we needed a repeat MRI to do before going up. I’m really anxious to just get up there to see what they say, so stay tuned! Everything has checked out well – the only thing she noticed was that the tone in his legs is a bit … slow. Meaning when she lifts them up and drops them, they flop to the table without much rapid regain. May just be the way he is, may be the Phenobarbital. Whichever, she wasn’t overly concerned.
Sometimes ignorance is bliss! All this watching and looking over such minute details is very stressful. So he doesn’t kick back within a 2 second parameter – does it really mean anything? Probably not. So, anyway. They also drew more blood to check his Phenobarbital level and to do the rest of his immunology tests. The first half they did last week came back normal. They did the rest today.
He slept really well for Nate night (go fig) only waking up at 2am to eat. Otherwise he slept until 7am. I'm hoping I have just as good of luck tonight. Until later ...
Sunday, January 20, 2008
Papa and Sherrill were here tonight to get another Fin Fix. They're leaving Thursday to go back to Baker City so it's nice to have them stop by when they can.
Fin's changing so much that when you don't see him for a few days, you're amazed at how he's grown and changed just within 72 hrs! Tomorrow after Fin's appointment we're going to see Robin's baby, whom I haven't seen yet. Blaze was born Thursday, exactly 3 weeks after Griffin.
Mr Fin sure has been sleeping tons! Just when I thought he was maybe getting past his sleepy preemie stage, he's back at it. Oh well, that's what keeps him growing! Can't we just freeze them at this age?
Mase is still doing good, although he gets ornery when he isn't getting enough attention (gee, ya think Ms Baby Powder?). Not only has he had a date with the Baby Powder, but he also pulled all his clothes down off his hangers in his room the past 2 days. He's sick again - and we're doing all but making him wear a mask! He's got runny eyes/nose and cough. Griffin's eyes have been matting shut, but I think that's just getting his tear ducts cleaned out. I sure hope he doesn't get sick again. Gotta love preschool. Your once-well child is now sick every week with some new virus going around school. Potty training is still frustrating. One day he's into it, the next he's screaming because we're making him "try" and go potty. We didn't want potty training to be such a negative experience (ie: screaming/kicking going to the potty - where's the motivation?). But there's a certain point, what do you do?? I wish he actually cared if he sat in pee and poop - but he doesn't. Nope! That's gotta feel ... great.
Friday, January 18, 2008
This was the scene that unfolded last night while we thought Mase was playing in HIS room. That is, until he came waltzing out with the baby powder – flinging it all over the walls as he walked. Lately, you get exhaustion mixed with “I’m the baby” syndrome and it hasn’t been pretty. We’ve been sneezing baby powder since yesterday!
Today Nate’s mom came and spent most of the day with me. We had a great time just chatting away. She had to hold and see Fin with her own eyes to make sure he was OK. He’s doing great, in fact he actually slept well last night! He only woke up twice to eat, falling asleep after each feeding. And … as if that wasn’t great enough, I discovered I could sleep on my side again without feeling as though my guts were being ripped out of me! It was a great night – and tonight’s my night off again!
We’re doing the dreaded potty training with Maysen now. It’s been a long time coming, but I didn’t want to start it while pregnant, knowing he’d probably revert once Fin was born. He’s doing really well now. At home he wears his underwear not having any accidents. Today he’s had a few, but that’s ok. We’re not being negative about it just being persistent. We say “can you make the water yellow??” … then the next time we’ll say “how about purple?” He likes to prove us wrong with the colors.
American Idol is back … and my favorite time of the show – the people who think they can sing but truly can’t. I find such joy in other’s embarrassment. I know, I should be shot, but I do!! It makes my day J
Off to nighty night.
Wednesday, January 16, 2008
This was Maysen's creative front the other day. Yes; he (on his own) stacked them in the opposite order ... in pairs of 2. Amazing kid ...
So, apparently an update is long overdue! On Monday Fin had his appointment and everything is looking great! Dr Herbert said that if she hadn't known his history or anything he'd been through, he looks like a 100% normal kid. She said that they're trying to get his appointment up at OHSU moved closer than February 15th. He's apparently #1 on the cancellation list - I'm hopeful there will be one between now and then. It would be great as we start new insurance on Feb 1 - and right now we're maxed out paying no more in bills. It would be great to get this consult and all followup studies done in January so they're free!
His phenobarbital level is 26, which they want him in the 20s so that's perfect. They are testing for immunology studies but didn't draw enough blood (way to go lab!) so they'll have to draw more next Monday when he's seen again and has to have another phenobarbital level drawn.
Oddly enough, Maysen came home from school today with a backpack filled with papers. One of them was a "You're child's been exposed" letter stating that on/around December 20th, Maysen was exposed to a child with chicken pox!! Can you believe it?! I called the pediatrician's office to see if the FINAL virus culture that was run on Friday was negative, as the preliminary result on Saturday was negative. Perhaps this eye culture that came up positive for varicella was true! I haven't heard back from the pediatrician to see if this is even a feasible case, but sure would be an interesting one. Maysen never had the chicken pox during any of this ... and he's had the varicella vaccine, but you never know! So I thought I'd run it by the doctor to see.
Tonight my sister-in-law got induced. She and I's initial due dates were 3 days apart. If her boy is born after midnight/tomorrow then the boys will be exactly 3 weeks apart as Griffin's 3wk birthday is tomorrow.
Tonight is my night off! Nathan and I decided to get smart and take shifts. We did this with Maysen and it worked lovely. Aside from not sleeping much with one another, it was great. One night he's "on call" to the baby while I sleep soundly in the bedroom, and the next night is my turn. At least this way one of us gets a full night's sleep every other night. No use in both of us not getting sleep. Nathan started his new job Monday and so far is loving it. I'm so blessed to have a husband that recognizes that yes, he gets up and goes to work at 7am, but so do I. I stay home, but being a mommy to (now) 2 boys is just as much work as going to the office all day. I have to say that although my new job as a mommy to 2 kids just started, I'm loving this housewife/mommy thing. Very fulfilling for me.
As for me ... I'm doing great! My wound has almost completely closed and I'm almost done with antibiotics. I've gotten rid of 8lbs of fluid that my body was holding captive during my distressing time. I have a non-pregnant tummy again! (kinda). I have almost no pain now and doing normal things (even lifting Mr Man - I just have to). Nathan's doing great - what's interesting about him is that we got his labs back and they proved that this virus was destroying his muscles. When muscles are injured they'll release an enzyme and Nathan's level was 10x the normal number. He's doing fine now and this has all be nothing short of a miracle. So thank you all again for the thoughts, wishes, and prayers as I'm 100% sure that they were heard.
Saturday, January 12, 2008
Dr Herbert called at noon saying that the lab had run the test for varicella that should have been run yesterday and the preliminary was negative (woohoo!). We see her again on Monday. Nathan starts his new job on Monday also (yes, thank the Lord he’s been off work and at home with me since December 18th!) so this will all get some getting used to – balancing a schedule alone. But, it means life is getting back to normal, so that’s good.
Here are some pictures over the last few weeks. Enjoy.
My grandma! She came to visit everyday! I loved her red sweater!
Helping change .. this was the first day he was home, December 30.
Peaceful boy in the hospital, looking like he feels much better.
He's tired of being in the hospital, too
First bath at home on Thursday.
Dad with Turkey Toes night before admission to NICU
Better than cafeteria food!
He was farting on my hand ...
Friday, January 11, 2008
It was Dr Herbert, stating that the State had called after hours last night and just "left a message" with the reception that Griffin's eye culture grew varicella virus. Yes, that's right - varicella (as in chicken pox/shingles virus). This made absolutely no sense - as none of the people he'd be exposed to had this, however varicella can cause encephalitis.
She had him come in to swab his mouth to try and confirm the varicella growth. It was confirmed with Oregon Medical Lab that this, when done STAT the report would be done in 3hrs. We got there at noon and did the swab, then Dr Pelinka came in to tell us that she spoke with a panel of pediatric neurologists yesterday (4 of them, in fact) who all were sitting around looking at Fin's MRI. They were all confused about the doom-and-gloom prognosis that Dr Goins had given us - because they were reading this as a pretty normal MRI. They reviewed the area Dr G was concerned the most about, but they were seeing it as a "normal process" of an inflamed brain from the infection process - and felt it was absolutely nothing to worry about. We have an appointment for consult in 4wks at OHSU with one of the pediatric neurologists reading the MRI.
Fin also had his echo today, being done for slight murmur noted yesterday in the office visit. The tech doing the echo said that he saw no abnormalities, though the definitive results would be ready Monday. It was reassuring to hear that there was no marked abnormalities.
So, I waited all day for a call regarding the repeat swab. At 7pm, Dr Herbert called saying she hadn't gotten the report and when she called to verify it, was told that the lab staff had already left and no one could help her. She paged the Head of the Lab, Head of Pathology and hadn't gotten a call back. She left me her home/cell/pager number as well as Dr Pelinka's #s stating that if Fin had any changes over the weekend to call them. About 15min later Dr Pelinka called me to voice her frustrations and assured me Monday morning she would be filing an incident report.
For now I'm going to go stare at him ... I'm so uneasy now not knowing what's going on and hoping his encephalitis doesn't recur. Oh - and we were given the Ok to decrease his phenobarbital dose by 1mg. Hey - it's a move downward!
Thursday, January 10, 2008
- While she was in residency, they were always taught that if a baby was started on seizure medication in the NICU, then they were always put on seizure meds for 4-6mo. Also because of the fact that Fin's EEG showed that he had major seizures for 24hrs, then she agreed with the fact of him being on Pheno for 6mo.
- She would discuss at least cutting his Pheno down.
- Although he's sleepy, she thinks that he seems pretty coherent. She thinks he's adjusted well to the Pheno already.
- She feels that even if there is some abnormalities in Fin's brain/MRI, they will heal themselves and he'll overcome this.
I forgot to tell everyone that they isolated the bug in Griffin. The cultures grew Parainfluenza Type 2. Although this is basically the common cold, they have no idea why this caused the encephalitis that brought along the seizures. It could have been another virus involved too - or could be a weird immune response -meaning his body overreacted to a simple virus (which could be scary for later).
Nathan's cultures haven't grown anything yet, or at least we haven't heard. I suspect it would prove to be much of the same as Griffin's illness. One thing's for sure ... this was a weird, weird virus. It's amazing to think of how many different doctors are involved, as Dr Goins has also sent Fin's MRI down to University of Cailifornia (@ San Diego).
One thing that did happen today, was that Dr Pelinka found a murmur in Fin's heart she hadn't heard before. She said that she wasn't worried about it, and would normally wait and just assess it again in 1mo, but based off his recent illness she wants an echocardiogram to look at the murmur better. She said his heart is changing so much it's not uncommon to all of a sudden have a murmur with all the changes. That will happen sometime next week.
And now I'm celebrating NOTHING going on tomorrow. Mase will go to school like normal but otherwise, I'm excited that I get to pick him up from school ... something I haven't done in over a month.
The bad news - well, disappointing news - is that Dr Goins feels that Fin has to be on Phenobarbital for the next SIX MONTHS. He also commented that the MRI was concerning - stating that there perhaps will be permanent brain damage from the havoc the virus reeked on his brain. He wasn't anticipating anything grossly serious, but perhaps learning disabilities, hyperactivity, etc. I don't know exactly how I feel about this, as Dr Pelinka just spoke to a pediatric neurologist up at OHSU yesterday who stated (after listening to the MRI report, his history, and EEG report) that he'd be inclined to just tapering him off of the Pheno now with repeat EEG/MRI later. He also felt that the MRI report wasn't something to be "completely" concerned about at this time. I realize that the neuro at OHSU hasn't actually "seen" Fin yet and Dr Goins has, however still feel that there was "that" much of a conflicting opinion that it might be a good idea to reach for a 2nd opinion from a pediatric neurologist up there. We'll talk to Dr Pelinka about that tomorrow.
So far so good. At least I have my boys home. There just are more stairs to climb - but taking one at a time for now.
Tuesday, January 8, 2008
Griffin s doing pretty good, too. I went to my doctor appt today, and everything is moving slowly (healing-wise). Then I went to see Griffin. My morning with him started out frustrated because they had oxygen on him – stating that his oxygen desaturated to the 70s. When I looked at what was going on when his oxygen level fell, I found they were feeding him on his back. Apparently side-lying position feeding didn’t get passed along to the new nurses. Once they fed him the other way, he did fine. Dr Pelinka called and I asked her to write an official order that they have to feed him side-lying, and they did. The nurse had also said he was very lethargic and not waking up for her. But, once I started talking to him, he woke right up.
Later that afternoon, the lady came to hook him up to an EEG machine, the machine that catches seizure activity. Dr Pelinka had talked to the pediatric neurologist in Porltand who suggested doing a repeat one to compare activity. He also said that if Fin was his patient, he might just trying him off of Phenobarbital (seizure med) to see how he does – as the seizures are more than likely related to the illness rather than a chronic seizure disorder. I am hoping that they at least taper him off of it – as this afternoon he seemed very lethargic. We bathed him and he was very upset, but once we get his clothes back on we could barely wake him up to eat. I sure like to see his eyes, but this afternoon was fruitless on that front. Tomorrow Dr Goins, the pediatric neurologist here in town will be in for a consult. Dr Pelinka told me that Fin’s looking so good that depending on what Dr Goins says – he might get to go home tomorrow! If not tomorrow, probably Thursday. Let’s pray Dr Goins has good news … oh! And the pediatric neurologist said he hadn’t seen the MRI that was read with an abnormality – but said that what it was suggesting as an abnormality seemed to be something normal in premies. That was good news – but we’ll wait for the official report.
Until tomorrow …
Monday, January 7, 2008
The "not-so-reprieve" news is that Nathan was admitted to the hospital today. The day Griffin was admitted he complained of headaches, Day 2 he ran a fever, Day 3 he had muscle aches, Day 4 (yesterday) he complained of really weak hands. Today he could barely get out of bed, put on socks, hold a pencil, or walk. So he went to the doctor today who sent him to an immediate neuro consult (with Dr Wilken who has been watching Griffin while hospitalized) who said everything was checking out OK, but admitted him to the hospital for further tests (MRI, lab, probable spinal tap). She said it was likely the same germ that caused Griffin to be so sick, so maybe if we could isolate the germ causing this, we would know what infected Griffin, too, in the end helping both.
I am in a daze and all this will probably hit me next week when life catches up with me. I had to miss my own doctor appointment today - and have been showing some signs of poor healing. I needed this reality to see that my family needs me ... well. So I'm trying to keep that in mind while both being there for my family too. Where is the balance??
Keep us continued in your thoughts and prayers. Where's the vodka??
Saturday, January 5, 2008
He had his MRI and although we didn't get the definative reading back, the tech running it said he'd done many many and Fin's looked absolutely normal.
His oxygen level off of all oxygen has been very stable - and he's pink as pink could be. He's gained almost a pound back from his birth weight, courtesy of rehydration from IV fluids.
They discontinued all his antibotics (gentamicin and ampicillin), so now he's only on the scheduled Tylenol, scheduled seizure medication (for all my medical friends, it's phenobarbital), and scheduled antiviral medication (Acyclovir). Dr Herbert is not only a great pediatrician but also on the Infection Disease board at PeaceHealth - so we couldn't be in better hands. She says that Fin will be on Phenobarb for "weeks" even after discharge. I guess better safe than sorry.
I held him all day and he's doing just what he needs right now - rest. I'm hoping he stays stable and *maybe* he'll be moved from the NICU early next week. Time will tell.
Thanks for all the prayers and thoughts. I've gotten many emails of encouragement and reassurance and although I might not answer them all, I want to thank you all for everything ... I will keep you updated as time goes on.