Two weeks at home

Things have been going pretty well for our little Sarah. She is now over 9 Pounds. She sleeps, eats, Poops, Cries and sleeps, just like a baby.
We have been having some issues with her enzyme intake. She has been taking very small quantities to help her digest food. Every time we increase the enzymes, she starts throwing up. The enzymes she is taking are made of pig intestines. I am hoping that we can switch her to Ultrace, which is a synthetic enzyme, and maybe will be better tolerated.
Will takes Ultrace and has never had any problems.
We took Sarah to Galena this weekend. She did great, although I think the ride was a little long. So, on the way home, we stopped off in Rockford for dinner.
Things are good. This week is a different doctor every day, but so far, so good.

Sarah @ Home

Sarah has been home for a week now. I have been waiting to get some good pictures to post, but with all the buzz around, we haven't had too many opportunities. The kid eats around the clock!!

She has had a few "Issues" with tolerating her enzymes. The nutritionist gave us instructions to increase the levels of enzymes (almost doubling) from the previous level. We drop some granuals into applesauce and feed her before she gets her bottle.

She did fine with 4 "beads", but threw up EVERYTHING when we went to 8. Then, she didn't like 4! We have since gone back to ground zero and started more gradually giving her the enzymes.

Christina was very upset as throwing up is a sign of another bowel obstruction and that can be bad. So, I will continue to monitor that process. She has been gaining weight and the doctors are pleased.

Sarah has had a number of appointments with the doctors this week and has had to get 4 shots. This also could be affecting her enzyme tolerance, so we will see.

I saw that the Nobel Peace Prize for Medicine went to some folks working on genetically altering mice to exhibit human diseases. In all the articles, they mention CF being the main disease. I found out that the CF Foundation funded one of these doctors efforts. So, thanks to all of you who have given to the foundation over the years and come out to our events. YOU funded Nobel Peace Prize winning research and you should be proud of that!!!!!!!

Sarah is Coming Home Today

Sorry for the delay in updates. We have been really busy with the charity event and getting Sarah ready to come home.

She has been doing really well. Her wounds have healed and she is gaining weight and getting stronger.

There have been a couple of delays in her departure. The doctors have been monitoring her growth and playing with her nutrional cocktail. So now, just shy of two month, she is 8lbs. 8oz, healed, growing and pooping the right color. Good to go.

We have encountered a number of new friends in the NICU. Nurses, doctors and other parents all with their own stories and problems. Our stay was longer than most, but not nearly as long as others. I feel great that we are going home and feel for those not going home.

So, in a few minutes, Christina and I will go and bring Sarah home. I have NO idea where we will put her!!

Long Overdue Update

Sorry for the delay, there has been a lot going on.

Sarah's recovery from surgery has gone well. Each day I see watch the nurses and doctors check her belly and redress the wound. The two holes that used to be where the stomas protruded were sown up on the inside, allowing the wound to "Fill In" from the outside. It looked kind of strange, but not too unsettling.

Each day the wound fills in more and more. Sarah doesn't like the redressing, and screams when it is done. I remember Will having the same attitude about it. But, other than the redressing, she seems to be in good spirits. She is playful and even cracks a smile from time to time.

The feedings, on the other hand, have been more of an issue. The first couple of Pregestimil feedings ended up in my lap. I had to carry my original shirt home in a bag Monday and Tuesday. Sarah eats very quickly and gives it back even quicker. When she is more regulated, she can hold the food down.

When she threw up yesterday, I was a little frustrated. When Will throws up, it means he has a blockage. I know there are many reasons why she might be puking, but I could not get it out of my mind that it might be more severe.

This morning, however, I got "The News". Every CF Parent gets "The News" at some, or many, points. It is news that makes you smile because it indicates that your fears have been calmed. You wait for "The News" for weeks and eagerly anticipate the day when you can get "The News". CF Parents giggle when they tell their story of "The News".

Mine came this morning. I called the nurse watching Sarah and she said, "Sarah took her last feeding well and then had a huge stool. It was really stinky." Stooling is the sign that says Sarah is processing her food and pushing it all the way through the system. She may not be getting any nutritional value from the food, but at least it knows the way from the front door to the back door.

As many of you know, there are signs that say "Your kid is going to be alright". It feels like someone just took a pallet of bricks off my chest.

Good News!!

Sarah came out of surgery like a trooper. Her vital signs were good enough to not need the vent.

She did however, look like she was in a lot of pain. She opened her eyes wide, grabbed Christina's fingers and stared at her almost as to say, "Help Me!"

The nurses responded quickly to that and increased the morphine. They also gave her a cocktail of other pain medication to fully compliment the morphine.

Sarah quickly calmed down and went into a slumber. She laid there for another 3 hours as Christina and I sat and talked and watched. She looked comfortable.

We decided, at that point, to leave for the day. Her nurse assured us that they were going to keep Sarah that way for a while until the pain subsided. They also said that the babies will only feel the main surgical pain for about 24 hours.

I just spoke with her nurse and she told me Sarah slept through the night and was doing well. I asked about the wound. Sarah's first surgery was followed by an infection and I am a little nervous about a repeat performance. The nurse indicated that the wound looked good. No swelling, no redness, etc.. I will probably be nervous about this for another day or so.

Summary: So Far, So Good.

Preparing For Surgery

Game on. Tomorrow @ 11:00 am. The prep begins today. Sarah is scheduled to have an NG tube inserted today, as well as being taken off Pregestimill and switched to Pedialite. She probably won't like that, but what are ya gonna do?

If all goes well, by 1:00pm tomorrow Sarah will be whole. This, I believe, will be followed by 7-10 days of relaxing.

I am a little anxious and nervous. We have had such good luck with the care she has gotten, that I can't stop thinking I might be too overconfident. That might not seem rational. Let's say I am cautiously optimistic.

Keep Sarah in your prayers.

The Cable Guy Comes on Thursday

Today, we found out that the surgery for Sarah is scheduled for Thursday, sometime between 8am and 1pm. This is GREAT news!! Sarah is ready, and we are too. I can see this hospital stay starting to take its toll on Christina. The kids at home still haven't really gotten used to her being gone so much and she feels guilty about that. She is kinda soft when it comes to Henry's sweet cry for attention. The boys would rather have her around playing games than when I am home forcing them to fabricate clothing for Cathy Lee Gifford.

I sort of feel that this surgery is like getting cable. They can't tell me exactly when they are going in, but it will be between 8 and 1. I spose if I thow the surgeon a few bucks, I can get hooked up with a sweet movie channel.

Anyway, if you can take a minute on Thursday to think of us and say a little prayer, it would be much appreciated. Surgery is always risky. Sarah does seem to be in great condition and ready for this next phase.

I have posted the video for this years Charit-A-Bowl event which has some footage of Sarah, Luke and Will.

I got a little gratuitious this year, so sue me.

Charit-a-bowl Update

It looks like Sarah won't be able to make the Charit-a-bowl. It's just not in her cards this year. We were hoping she'd be home, but with all the set backs and obsticles she's had to overcome her surgery won't be in time.

Speaking of the Charit-a-bowl, if you're reading this, you're invited. If for some reason you didn't get the invitation, please go to charitabowl.org to get the details. If you can't make it but still want to make a donation, please write checks to "MKCFF" and mail them to 900 Woodland Drive Wheeling, IL 60090. Lastly, this isn't about bowling, it's about funding a cure for this terrible disease. Non-bowlers are invited and encouraged to come! Thank you for all you've done for our families.

Central Line Dilemma

Today the nurses told me that Sarah's blood infection has cleared from the peripheral site they've been testing (her arm) yeah!!, but still shows up in her central line. That's an IV that was placed during her first surgery. The doctors think it's best to pull it because it seems like her body is rejecting the foreign object. This would be great if she didn't need it anymore, but unfortunately she does need it to administer her antibiotics and IV nutrition. So they have to either put another one in or find another way to get her the fluids she needs. They talked about possibly having to use a PIC line until they decide if she needs a central line. The central line is able to move more fluids quicker than a PIC line, so they'd like to have one available. The nurse said they'd probably wait until Friday to make that decision. Friday seems like an eternity away!

Not so Fast, We've Hit Another Stumbling Block

Saturday as I walked in to see Sarah, Cindy, her nurse was just getting of the phone with Mike. She needed consent from one of us to do a lumbar puncture. She spiked a fever friday night after Mike left and her blood was testing positive for an infection. They wanted to test her spinal fliud to make sure it wasn't infected as well. Preliminary results have ruled out Meningitis, thank God, but they still don't know what caused the infection and they may never know. She's on antiboitics that may take 21 days to administer depending on the results of the lumbar puncture. The LP results should be back today. I haven't been able to confirm whether this puts off her last surgery, but I hope to find out soon. She will probably be in the hospital for the Charit-a-bowl. I was hoping to have her home by then. When I saw her on Sunday night she seemed to be doing better.

No Dumping

I just spoke with Megan, Sarah's nurse for the day. She indicated that Sarah is awake and happy and alert. She has taken to the new feeding schedule and is progressing nicely.

Megan also said that her 'output' is much more in line with what the doctors were expecting. So, the dumping issue has been reduced for the time being.

Maybe Sarah just needed another day to let her body rest before all organs ready for action. The doctors are happy with everything. We will restart the enzymes soon and, hopefully get back on track for the next round of surgery.

I went to a CF fundraiser last night where I met a 26 year old woman with CF. While she does have lung issues, she was upbeat and had good things to say about her treatment. I know we will find a cure.

I'd rather have a bottle in front of me than a frontal labotomy

Joe Feeding Sarah
Originally uploaded by Mike Kolassa

Sarah has had some issues processing her grub. The doctors are not surprised, but also not happy. When a person is 'dumping', (their word, not mine), they get little or no nutritional value from the food they eat. To this point, Sarah's food has consisted of mother's milk, synthetic enzymes and other supplements.

This can be caused by many different variables. CF children need enzymes to digest food. Add this to the fact that organs shut down after surgery and bacterial concerns always play a big part in digestion and you have a cornucopia of nutritional possibilities.

Last Thursday, Sarah started on Enzymes, which she did not like. We decided to give her the powdered substance in a small shot, rather than ruin her entire meal. At the same time, the gut doctors wanted to start her on an antibacterial to beat down any bad bacteria in her stomach that might be causing issues.

I was not thrilled as I did not want to try multiple things at the same time, but until I get my medical degree renewed, I decided to leave that decision up to the paid professionals.

The antibacterial was added to milk and seemed to make it thicker. Sarah could not easily get the concoction out. The nurse tried 6 different nipples, but nothing worked. As she kept running around looking for different nipples, Sarah was getting more and more frustrated. Finally, when the nurse wasn't looking, I bit a hole in the top, and all was fine. She may have gotten too much too quick however.

By Monday, the doctors had decided that no progress was being made and looked for new ways to treat the dumping. On Tuesday at the 8:00 am feeding, they decided to take her off food for 24 hours to more accurately evaluate her situation.

Now, she won't remember this later on. But, I can't imagine going that long without food. Actually, I can't imagine skipping lunch.

So, today we will try again to slowly bring up her feedings and, hopefully, see her process her food.

Enzyme Challenge

Yesterday I called the nurse to see how Sarah was doing and Amy said she was having trouble with her feeds. I asked her what she meant and she described Sarah as having boughts of gagging and gas that really seemed to make her uncomfortable while she was eating. I was shocked because she seemed to be doing so well prior to this report. Amy ordered some medicine for the gas. Since she had been doing so well until now I was pretty upset to hear all this. I don't want her to have to take any medicine that she doesn't need.

Amy seemed to think that Sarah didn't like the Pregestimil (a pre-digested formula they started giving her after they decided she was "dumping"). Will had Pregestimil when he was first born and he hated it too. It smells so bad that I understood his dislike for that formula. Sarah not liking the Pregestimil seemed like a possible reason for the extreme change in her demeanor while she was eating. We tried a few things during her next feeding and determined that it wasn't the Pregestimil after all.

They started her on the powder enzyme, Viokase earlier that day. I was pretty excited about this enzyme because I thought it would be easier to give her since they could just put it in her formula. I can't really remember how we gave Will his enzymes but I know they weren't using this powder when Will was a baby. Nell, the nurse in the next shift, thought maybe she didn't like the enzymes. So for this next feeding we split the 60mls into two bottles, one with 20ml of formula and the enzymes and the other with 40ml of plain formula. She choked and gagged when I gave her the bottle with enzymes and drank the plain formula down without a problem.

After this, we realized she liked the Pregestimil, (which I thought she'd absolutely despise), but couldn't stomach the enzymes. When I went home I immediately Googled "Viokase and taste". One website described Viokase as "so vile that my daughter wouldn't eat her food if it was sprinkled on it". Another said it is a medicine they use for animals and it's malt or meat flavored so the animals will like it. I couldn't find any websites to confirm or deny that the Viokase they use for animals is the same as for humans. But after this I thought we definately have to do something to make it better for Sarah.

The Waiting Game

Things are running smoothly. Sarah is progressing everyday. The doctors are very happy, so I am happy. So, what has happened in the last 5 days?

Sarah is now up to 60 ccs at feeding time. That is good, but the staff thinks she is dumping most of it. This is not earth-shattering as the CF does that and the stomas are so high that there is not much runway to land on.

If she didn't need to be on the IV, she would be home with us. Sooooo, the waiting game begins. We will continue to track her progress and wait for the surgeons to say "It's go time!" for the next surgery

Storm Clouds (Literally)

Yesterday, on the way to the hospital, it rained very heavily. I could not believe how the trees were being blown around. While sitting in the turn lane at River Road and Rand Road, my car was being pushed back and forth.

The forecast was for tornado like rain with the heart coming just south of where I was. I ran from the parking garage through the rain and was pretty well drenched by the time I reached the NICU.

Sarah was fine, but the little baby down the aisle was having a tough time. You get to know the other folks around you. Everyone comes at around the same time, so schedules put you together with the same people every day. His father and I talked for a while. He seemed optomistic. They had surgery today. I hope it went well. Unfortunately, I could not stay long enough to see how it went.

Sarah passed a milestone yesterday. Her lower section needed to be irrigated to ensure proper flow. This is a prerequisite for the third surgery. To date, the attempts to irrigate were greeted with mild opposition. This worried me. But, yesterday, there was a breakthrough. Now, with all sections of the intestine functioning successfully, she can move on to the next round of competition.

The hospital had a 'Code Black' which apparently means the nurses can't leave because there is no guarantee that their replacements are going to make it in to work. They also had a power outage, but unlike me, they have a backup generator.

I wish I had a generator . . . in my car, because, on the way home I got a call from my parents whose sump pump had to be bailed. I knew I kept that 15 year old kid for something.

By the time we arrived at the house, my mom and dad had filled every possible water tight container available. Joe and I ran buckets, trash cans, cups and teaspoons up the stairs, out the back door and away from the house.

The new neighbors (New to me, I haven't lived there in 20 years) have a generator and hooked us up.

Today, Sarah looked great. She was wide awake when I got there and I was able to hold her while she was active. That made the day.

Continued Success

Sarah is now up to about an ounce per feeding. She is tolerating everything and all is good. A surgical resident came by today and told me that the next surgery is usually scheduled 6 weeks from the first.

That timeline puts the next surgery somewhere around September 21st.

We both continue to gain weight at an impressive pace.

Dog Days of Summer

Sarah is still doing great. She has been given mother's milk and seems to be tolerating it well. Today, she had 25 ccs (a little less than a shot) for lunch and dropped into a food coma. I rocked her for a while until we both fell asleep.

I awoke to find a group of residents laughing at me. Oh well, both of us are rested now.

Sarah Knows Best

Well, it seems that Sarah has been driving the timeline for her recovery. Last week she decided that it was time to remove the respirator and kick the morphine habit on her own.

Yesterday, she dicided it was time to yank the NG tube out. The nurses concurred and decided not to put it back in. Everyone seems OK with that decision. Maybe we have a doctor on our hands.

The feedings have changed from pedialite to mother's milk. Sarah likes that switch as she displays the kind of consumption techniques that would make Kobayashi jealous. Unfrotunately, she only gets about 10 ccs of liquid at a time.

Each day we will increase that amount and see how her body processes the food.

I also officially met the parents of our neighbors in the NICU. They have a tiny little one. The timeline looks like we will all be there for another 8 weeks or so. I imagine by then we will all get to know each other very well. There tends to be lots of time to sit and talk in the NICU.

Two Things All Kolassas Can Do.

This morning went very well for Sarah. She sucked down all the Pedialite she was given and then produced. This should pave the way for more and different feedings.

The doctors did pull some more bile out through the NG tube, but that should be only temporary.

Things are looking good. All the doctors have been by and have given their seal of approval. We will see what the weekend brings.

Progress!

bluebow
Originally uploaded by Mike Kolassa

I have not written here much in the last 4 days. I have been busy! We have been able to hold Sarah and that has taken up some of or all of my time.

She certainly likes to be held. So, we sit and rock and she sleeps. Every hour or so, I nod off and the nurse taps me on the shoulder.

So, here is the progress report. Every day the doctors see good things and each day we remove some obstacle. Tuesday they took off the pump from the NG tube and let gravity do it's work. Wednesday, they switched her from the hot bed and put her in a regular crib.

The surgeon, Dr. Leoff, came by yesterday and said she looked good enough to start giving her some Pedialite through the mouth. We will see how that goes today. Sarah REALLY wants to eat something. The pacifier is just not cutting it.

So, Sarah is ahead of schedule. We hope to see her tolerate the Pedialite so that we can try milk (or pregestimil) that would be more substantial.

She has not lost much weight, which is good. She weighed in at 6 lbs 5 oz on Tuesday.

I am off to the hospital in a few minutes and will provide another update later.