Time for an Update

Wow, it's been a few years since we have updated the blog. It's been a rollercoaster for sure. Linc will be 6 in April. He's in a special needs preschool in Marion right now and seems to enjoy it but we have to make a decision for next year on where to place him. I never realized we no longer have 'special needs' schools here.. they mainstream all the kids into regular schools which is not a great option for us. Marion has very few MH units in the districts and the ones that do are not what would work for Lincoln so it looks like he will go to our local school and be in a regular class with an aide unless some new options pop up before then. Luckily Greg and I both work at the school so that will be helpful. Lincoln has struggled with feeds so he is still dependent on TPN for 12 hours a day and feeding tube feeds for several hours a day as well. He has endured multiple surgeries and hospitalizations over the last few years. The worst was last summer when he spent the majority of the summer at Nationwide Children's Hospital. Finally released just to end up right back in there due to a gentimicin overdose due to a lack of communication with our TPN supplying pharmacy (yeah we switched immediately). That particular incident damaged his kidneys quite severely which resulted in adding in a Nephrologist to the mix of doctors we have to deal with. NOT FUN.. luckily is kidney numbers did gradually improve and we only have to see them once a year from now on. During that same hospital stay, after we went home for the night, he managed to pull out his central line that he had just had surgically implanted less than a week before. It was very tense waiting to see if we could manipulate the same site to have another surgery to place a new one since he is running out of central line access sites. Meanwhile he was tortured with finger pricks constantly and peripheral lines wherever they could stick one several times a week. Worst summer EVER... We did get lucky and the amazing surgeons were able to make it happen though. Big relief! TPN is what keeps him alive and if we lose all access sites for his Broviac (IV) we are in serious trouble. While he was in there over the summer he developed a super strange condition that no one could seem to figure out.. his lab levels were off the chart bad in several areas and he had bizarre body rash.. his fevers hit up to 105+ for no apparent reason and he was sooo sick... we were honestly concerned about losing him a few times. They finally contacted Cincinnati Children's and sent some blood to be tested and it came back as Macrophage Activation Syndrome. Rare, weird, life threatening disorder brought on by all his illnesses. So we test monthly for this to keep his levels in check.. when they start to rise we will know it's back and we need to be admitted asap. We are lucky though that we haven't fought that particular demon in a few months though. We just need to be sure we tell any medical professionals that we work with that he does have this unusual dangerous disorder so they have a heads up for treatment. Lincoln is still non-verbal but he is slowly making progress.... he says DUDDD (DAD), Ma'am (MOM), Brud (brother), and my all time favorite.. NUHHH (NO!). That one makes us laugh. He is hilarious and super sneaky smart. We warn our visitors he is a bit of a 'pick-pocket' lol. He will 'fall'into you like oopsy then you will realize whatever was in your pocket is missing.. usually a phone.. lol! We think he feels guilty though because in a few minutes he will usually come back over and give it back to you. Just last weekend during one of Ohio's frigid snowy days Greg and I stepped outside to check out the truck and realized mr. sneaky pants locked the deadbolt on the door.. the one we have no key for. Awesome! We go check sliding doors, nope both locked! Kept trying to explain to Linc how to push the locking handle down to unlock it, it can be tough to do... no luck. We walk around the house hoping to find an unlocked window while freezing and here he comes walking out onto the deck like 'hey guys whatcha doin??" so he DOES know how to push that handle down! So funny.. We made the risky decision to book a 5 day beach vacation for all of us in May.. risky because we never know if he will end up in the hospital during that time and we will lose our deposits but we decided it's worth the try. Sooo.. we found a gorgeous condo right on the beach in Myrtle Beach we are going to try out. As you know, Lincoln can not get in water or get his chest area wet which is very challenging but we think he will enjoy taking walks down the boardwalk and checking out the aquariums, museums, etc. Cole is bringing a buddy of his that is a super great kid so we have made a deal.. they do their thing and come back to watch Linc for a few little spurts (while linc is not hooked up of course) so Greg and I can go to the beach or something. We will see how that works out..lol. So keep your fingers crossed everyone stays healthy and NOTHING goes wrong that week! This would be our first family vacation since Lincoln was born and is long overdue :). We have had some nursing changes at home due to our long-time nurse getting her degree and moving on but I think it will all work out. We have a new day nurse that we really like so that's wonderful! We are happy to have the blog going again and to keep everyone updated on little Lincoln.. it always surprises us when people we haven't seen in a long time still ask about him. He's such a sweet happy kid and we appreciate all the prayers and concern for him. I will add some pictures soon.

Just shaking his mints..

You expect me to drink this coffee cold??? And where is my newspaper??

Well.. I guess the water bottle won...

Bro's

OH MY GOSH>> what are you doing to me MOTHER?

I will gladly play with the yogurt but don't even THINK about putting it in my mouth..

Ok Dad, if this pic ends up on facebook you're in big trouble!

A little Christmas carol torture by Daddy...

The Dink is doing well! He is up to 25 pounds and down to 16 hours on tpn per day.. that gives him 8 hours of freedom from tubes! He has been in and out of the hospital due to line infections but we are home now and praying we stay home for Christmas.. He still doesn't eat or drink anything but we keep trying.. He is close to crawling and into everything he can get to.. He loves to sit with a basket full of toys next to him and dig through it.. so cute! We moved him to a twin bed with rails to give us a bit more room for his tpn and feeding tube bags... seems to be working out really well! It helps that he can watch his tv and his beloved channel "Babyfirst tv".. he LOVES that channel and it is very educational so we love it too! He understands the word NO and has a funny reaction to it.. he starts off sad about it then goes into ANGRY mode... haha.. he gets very mad at US when he gets told NO... it's hilarious to watch really.

His labs have all been coming back with good results.. sometimes he will have some elevated levels but nothing to be too alarmed about. We still have a nursing shortage.. it's very difficult to manage but we are doing the best we can.. We have a night nurse a couple nights a week but no day nurse so we are relying on Grandma when she is in town to help out... I try to work 2 days a week but it's almost impossible with no one to watch Lincoln.. we really need a dependable RN for a few days a week but no luck finding anyone yet.

We are looking forward to Christmas and seeing the boys with all their new toys and presents... we will be sure to post pics soon :).

Merry Christmas from the Rossman's!

Fighting Infections

Lincoln has been in the hospital for the majority of the summer due to infections and was admitted again today. He was in all last week for yet another central line infection.. the cultures were negative Thursday so they allowed us to take him home on one IV antibiotic (vanco) but unfortunately this infection popped back up even worse and they have been unsuccessful in killing it. They have been trying everything possible to avoid removing his central line because babies typically only have 4 access sites to use: arm, groin, leg, neck. Once you remove a line from a site you cannot ever use that same site again. That's very scary.. if you ever run out of usable sites you cannot do anything else for the child so obviously they are holding that as total last resort. They performed an echocardiogram today to see if the infection is in his heart but it was negative. They tried to do an MRI on his chest today to see if he has any other usable sites but stopped it because his tonsils are now swollen and they do not have a good enough airway to safely sedate him. Now we have NO idea what their next move will be. They cannot stop this awful sepsis infection and they cannot do an MRI to move to plan B. Once he acquired his first line infection it's just been nonstop.. it seems to have attached itself to his line and is persistent...

He is still totally dependent on TPN and does not eat or drink anything orally.. we give him 10ml's per hour of a special formula for 16 hours a day through his g-tube but he usually spits it all up.. we are still hopeful he will someday grow enough intestine to eat normally. Not looking so promising right now though.. yes we are very frustrated. On a good note, he is still a happy smiley little boy who is progressing with therapy quite well. He has changed so much and is so sweet and funny. We will add pictures soon. He is 22lbs 9oz as of today.

At the moment he is in room 4019 at Children's.. we will update this page and also his facebook page often.. thanks for keeping him in your prayers. His facebook page is http://www.facebook.com/?ref=home#!/pages/Marion-OH/Linky-Dink-Micro-Preemie-Miracle/225220749018?__a=7&ajaxpipe=1

Lincoln, June 2010

Tsk Tsk Tsk, Betty Crocker is such an amateur...

Oh, hello BINK! I've missed you!

Don't let the monkey bib fool you... I'm a badass!

Clapping for himself.. and yes, he deserves it..lol!

I'm a happy boy!!! Just ready for Cole's big baseball game at Morral Park!! I am the fill-in guy in case someone doesn't show.... watch out SPARTANS!!

Just showing my nurse how to 'walk like an Egyptian'!

Big Bro Cole chillin' in the hot tub! And yes, you can count his ribs from here but I swear we feed him! I guess doing all that P90X at his Dad's house is working...lol!

This Babies-R-Us photographer is sooo particular.. "lean back, head to the side, look relaxed' sheesh.. modeling is crazy!

In Daddy's office...

Having a blast.. even though my socks are pulled up to my knees! haha

The Dink.

Well Mommy I'm sick and tired of you always making Indian food and making the whole house smell like curry.. we are from OHIO! How about a pot roast for once? sheesh.

Alright Daddy, give me your phone, I will find a ref for tomorrow's game.. it can't be that hard!

HAHA.. no, this is NOT Nicholas Cage's mugshot, it's Dink's first haircut..LOL

First haircut... thanks Grandma Trudy!

Passed out in the camper... tired of seeing Mommy beat Daddy at Scrabble again!

With his beloved NICU nurses, Kim and Michelle..

I'm not sure where to begin.. so much has happened since the last update. I wasn't sure if the blog was still visited so I kind of let it slack for a couple months but lately have heard from people that they still check it and think of little Linc.. so here we are, updating finally :)! April was a good month.. .Linc had his first haircut.. he did sooo well and was such a big boy! I think it helped that my best friend's mom was the barber "Grandma Trudy".. and Cassy was there to hold him so I could take pics.. he was the little celebrity in the salon.. they had all been following his progress so I think they were happy to meet little Linky Dink finally!

May went by so fast! Lincoln stayed healthy and happy and we kept busy with ballgames and school... we are loving the summer days! We took Lincoln to Ridgedale's graduation ceremony.... and it was HOT in that gym... what we found out later is that Lincoln cannot get overheated, or sweat at any point. He must be kept in air-conditioning or by a fan at all times in the heat. If he sweats it will cause sweat to form under his broviac dressing which can/will cause a central line infection. I guess if you think about it, he has this dressing and port in his chest that covers about 1/3 of his chest area.. It would have to be uncomfortable and I can see how easy it would be for that to sweat.. knowing how dangerous line infections are, we now realize that we cannot take him to those events any longer. Our doctors told us if we are hot and need to drink water, that he is 10x hotter.. that is sad for us since we love the outdoors and the water. Thanks to his broviac central line he cannot ever be in water, get wet, or sweat. That kind of limits our summer activities lol.. but that's no big deal compared to what this little guy has been through.

June is here and has been both good and bad... the good part is Greg has now crossed the line into adminstration! He is now the Assistant Principal/Athletic Director for grades 6-12 at Ridgedale... I am soo happy for him.. he is such a dedicated, hardworking, enthusiastic person.. I know he will do very well in his new position! Go Rockets!!

The bad part of June so far is that Lincoln is back in the hospital.. but hopefully only for one more night... as I was rocking him Sunday evening I thought he felt a little bit warm.. I took his temp and it was 101.3.. I took it again in thirty minutes and it was 102.3.. so I called our team and they said to bring him straight to Children's... this was likely a central line infection again.. so we frantically packed and took off to Children's.. we called ahead but due to the fact that it was a Sunday evening we were forced to go to the ER to get admitted.. well that turned out to be a FREAKING disaster!!! We spent 5 hours in that horrible ER.. all those sneezing, coughing, hacking, crying people.. grrrrrrr... that was not what was supposed to happen.. it was 1:30am before we got to a room in the GI unit finally.. so Linc had NO meds or fluids for the whole 5 hours and was exposed to WHO KNOWS WHAT... I seriously almost freaked out on some people.. I know they were busy but when you have a kid with a fever that has a CENTRAL LINE.. you kinda move on it.. but no... oh well.. over and done with. So, the final result is that he has para-influenza.. and not a line infection.. ! If he has no fever tonight they will let him go home tomorrow...

I would love to post more pics and info but it's late and it's been a long week so off to bed we go... but we will post again soon.. thanks for reading Lincoln's blog.. and thank you all for the thoughts and prayers!

Back in the Hospital Again!

Hanging out in his hospital crib...

Exhausted after a long day of doctors and tests..

Not feeling so well ....

The week started off very badly with the awful Neonatology Clinic but we didn't expect to end up in the hospital! Monday was Lincoln's Clinic visit and GI checkup... we thought he felt a little warm that day but his temp was normal.. Wednesday morning our nurse took his temp and this time it was 103.7! Of course that meant I had to take him straight to Children's. Greg couldn't leave work so I had the scary task of driving him by myself to Columbus. He was sooo hot and covered in sweat, I seriously feared the high temp would cause him to have a seizure or something on the way down but luckily he did not. We finally made it and when they took his temp again it was 104.8. We are not allowed to give Lincoln any type of medicine, such as Tylenol etc.. because of the possible liver damage so they pumped him full of fluids and heavy antibiotics. Eventually they did give him Tylenol which seemed to help. He had a very high heart rate and blood pressure also. The big fear with kids that have central lines, is that they could get a line infection which can be deadly. At one point during our NICU stay, one of the doctors told us that line infections are the biggest cause of death to these babies so we were very worried. They placed him on gentomiacin, vancomyacin and another antibiotic to combat it and luckily, it has worked. The lab results show he does have a central line staph infection (gram positive) but he has responded to the treatment and is much better now. He will need to stay on iv antiobiotics for 10 days but because we are trained with his iv line and have home nursing we may be allowed to bring him home Monday and administer the vanco ourselves through his Broviac. That would be wonderful considering Monday is also his first birthday!! He had the doctors very very worried but once again he bounced back. He has enjoyed getting visits from his favorite NICU nurses while he is here though! We contacted the Easter Bunny and asked him to please visit our home NEXT Sunday so that we can enjoy the holiday with Cole there also.. so for now, Easter is postponed :). We are having cake in his hospital room tomorrow so he can celebrate a little with his nurses and of course we will do it all over again at home Monday... hopefully! Oh, and the BIG birthday party will be in July, on his actual due date... I think he deserves three birthday parties in one year :)! Thank you for all the prayers and messages! We will keep the blog updated on his progress... He is in room T4016.. but hopefully only for a couple more days!