First hospital stay

I logged in and geez, I haven't posted anything since the beginning of March.  I really need to do a better job at this!  So much has happened, there's no way I can re-cap the last three months really without getting lost in trying to remember everything.  Let's just start with what is going on now.  Christopher had a cold (along with the rest of the Wright family) and his cough was lingering.  We tried two rounds of amoxicillon and even a round of Bactrim to which he broke out in a rash.  Dr. Dellon explained she would call in another 10 day course of amox. and the goal was to have the cough completely gone at the end of the 10 days.  If not, then she explained she would want to do a Bronchoscopy to check his airways and see what is going on in his lungs. 10 days pass and he improves for sure, but I keep hearing this random cough flair up and make the call to see what we need to do.  Dr. Dellon explains the procedure to me and then surprises me with the fact that she would like to admit Christopher after the procedure to start IV antibiotics for possibly 14 days.  Whoa!  I was shocked, I never dreamed we would be in the hospital at only 5 months old.  I keep battling with feeling guilty or somehow responsible.  I know, I know, I didn't cause this to happen, but as a mother I still just feel like there should have been something I could have done to prevent this. 

We quickly made the arrangements to get him here and for me to be able to stay with him and work remotely.  A huge thank you to my boss and co-workers for being so supportive, understanding and helpful.  I appreciate the help more than words can express.  We drove up early Tuesday morning to be here by 7:30.  Christopher couldn't have any formula after midnight and only clear liquids up until 5:30 that morning.  Needless to say by the time we got checked in and in the surgery waiting room, he was getting pretty antsy.  We met with the Dr. performing the bronch and the anesthesiologist (sp??) and they took him off kicking and screaming.  Not easy to watch.  The Dr. came out to talk with us probably after only 20 minutes and explained that the procedure went well and he handled it fine, there was a significant amount of mucus she saw in his upper lobes and they were able to squirt the saline in his lungs and suck it back out in order to get samples to culture.  It would possibly be 3-7 days though before the cultures might be ready so they would admit him and just start him on a broad spectrum antibiotic until they got clear results from the samples.  The picc line team was working on him and she said it wouldn't be much longer.  Fast forward an hour and a half and finally they come out and say that one of us at a time could come see him in recovery.  I went first and I could hear him screaming all they way at the other end of the hallway.  I felt so bad for all the other kids in the recovery area that were resting and sleeping off the anesthesia, because Christopher was pissed and letting everyone know it.  His poor nurse looked helpless.  They had given him 2 bottles of pedialyte and he sucked them down but wouldn't calm down.  I made him a bottle as quickly as possible and got his enzymes ready and then he absolutely refused to drink it.  I think his throat was so sore and the screaming on top of it really made it worse.  Finally they just gave him something to relax him and tylenol and that did the trick.  He passed out in my arms and I finally got to take a look at him with his arm all bandaged with the picc line and his foot had an IV stuck in it so they could give him fluids and meds until the picc line was ok to use.  Once they have a picc line in, they have to order an x-ray to confirm it's in the right place and safe to use.  After being in recovery for almost 2 hours, they finally got us into his room so we could get settled. 

We have met so many doctors, nurses and assistants I can't keep names straight at all.  There is a CF team who comes every morning for rounds and one Dr that visits throughout the day and other than that it's mostly just wonderful nurses and respiratory therapists.  Wednesday morning after rounds, his Dr came in and explained that already his culture was showing "something" growing, which wasn't a shock, but I really also just wish they would have said he is just growing normal bacteria.  This morning during rounds they told me that he has cultured Pseudomonas and despite her efforts to convince me its ok, I am pretty devastated.  I know better than to believe everything you read online, but I have heard so many bad things about Pseudomonas and how pretty much once you culture it, you never really get rid of it.  I have lots more researching to do so I can fully understand it, and so I can try to explain it to others without sounding like an idiot.  Then later this afternoon they came back in and said he tested positive for the Rhinovirus, which is really just a common cold, but that we were back on "droplet precautions" and more or less quarantined so we don't infect anyone else around.  I swear I don't know how I will ever really know when Christopher is sick, he has seemed happier than ever the past few weeks.  He is so strong and smiles all the time, it's hard to believe that all along he has been sick.  Every Dr or nurse that walks in comments on how sweet he is and he just smiles and flashes those baby blues.  They also can't believe how chunky he is!  He is not your stereotypical CF'er that is thin or sickly looking.  He is weighing in over 18 lbs and still eating like crazy!!  Have to admit, it's kind of nice to have all his formula and rice cereal and meds provided each day.  We can save a few bucks maybe over the next few weeks.  Yes, few weeks is what we are looking at.  This morning the Dr. said that 2 or 3 weeks is not unreasonable at this point.  They are doing his chest PT 4 times per day and his IV antibiotics are every 8 hours for now.  There is possibly the option to take him home towards the end of this stay here and I can administer the IV antibiotics myself, but I'm not really sure I feel comfortable doing that.  Atleast not right now since its his first major infection and he would have to come back up here anyway to have the picc line removed.  Plus, if I had to change the dressing on the picc line, I'm pretty sure I would pass out.  The nurse yesterday didn't know what she was asking of me when she asked if I could help her with the dressing because the other nurses were busy.  I am not a fan of needles, nevermind this big catheter sticking out of Christophers arm that has to be cleaned weekly and re-dressed.  So, not sure this time around we will bring him home to finish the treatment.  I want the best possible opportunity for him to get better and really that means he should stay here and have the proper care given by the people who know what they are doing.  :) 

Anway, that is all we know right now.  Ashlee had a hard time leaving last night and it broke my heart.  She kept running back in the room with tears in her eyes to give both Christopher and me hugs and kisses goodbye.  She is such a sweet girl and misses her brother so much. 

Once they make rounds in the morning I will try and update everyone again so I get in the habit of blogging like I promised to do way back when I was pregnant. 

Hope everyone had a wonderful and safe 4th of July!!!

Weight check

Chris and I gave in and ordered an infant scale online so we could stop worrying about whether or not Christopher was gaining weight or not.  What a relief!  We weighed him on Thursday and he is 10 lbs!  No wonder I am not getting any sleep and he wants to eat all the time, he is a growing boy!  :)  We have increased his enzymes to 1 and 1/2 capsules which isn't the easiest thing in the world to manage, but it could always be worse.  It all goes hand in hand, growing and eating more, the more enzymes he will need.  All I can say is thank goodness we don't have to use cloth diapers.  Our next trip to Chapel Hill is March 13th and our list of questions is growing.  The nice thing is how understanding and caring his team of doctors and nurses are, they don't care how many times I call with questions or concerns, they are just wonderful. 

Shame on me!

I don't know where the time has gone!  Christopher is 1 month old today!!  Shame on me for not posting since his birth, there has been alot going on and I feel like things are getting more routine for me now.  Now being the key word there, lol.  So, Christopher was born January 24th, 2012 @ 12:04 pm weighing 7 lbs 15 oz.  No complications during delivery and bless his heart he definitely did not have a bowel obstruction, it was clear to us within the first few hours.  :)  Ashlee was such a trooper and was so excited to come visit Christopher and I at the hospital, she still talks about going in the elevator to come see us.  Ahhh, the little things.  So much has happened, I am sure to leave something out, but in a nut shell here is what has been going on. 

After coming home from the hospital, it was evident that what Dr. Dellon had told me about Christopher being Pancreatic Insufficient, was indeed the case.  I won't go into detail, but the number of dirty diapers was between 20-25 per day and just not normal.  They had noticed in the hospital that he had lost more weight than they like to see so we called Dr. Dellon @ Chapel Hill and she called in his prescription for enzymes.  I was so nervous about feeding him the enzymes with a spoonful of applesauce, I mean, really a 1 week old will be able to get it down??  He amazed me, eats that applesauce like a champ and we haven't had a problem.  He probably would enjoy more than just a spoonful if allowed, which is something I intend on asking at his next appointment.  He has a pretty ferocious appetite and keeping him sastified has been the biggest hurdle. 

After 1 week he made it back to his birth weight, on the dot actually.  The pediatrician was pleased and said that is all they ask at 1 week.  We went to Chapel Hill once Christopher was 2 weeks old for his first appointment and his state required sweat test to confirm the diagnosis.  Talk about torture!  It wasn't painful for him, but it was a long, tedious test and he screamed his head off the entire hour and a half.  Ugh!  It was a long day there and back and we met with his team of doctors before rushing to get back on the road to get Ashlee.  It took a little over 2 hours to get there, but atleast this time with Chris driving, I was able to get us there without getting lost.  I blame mapquest for my crappy first trip. 

So far our daily routine consists of morning respiratory therapy, I'm getting better at this and I don't feel so much like I am just beating on him now.  He has to have 1/8 tsp of salt added to a feeding and some NASTY liquid vitamins once a day.  Then evening chest therapy again. His enzymes have to be given before every feeding, which doesn't sound so bad until he is soooo hungry in the middle of the night and crawling out of bed to get the applesauce and enzymes can be frustrating.  I know how important it is though for him to get them, if not he won't be comfortable after his feeding and it's definitely not worth skipping.  We go back March 13th and there will be more tests performed on him at that point.  Unfortunately, we will have to take Ashlee with us at some point for her to endure the sweat test too, but she will be much easier to handle and explain what is going on.  I say that now, we will see. 

We have been truly blessed by all the warm thoughts and prayers sent our way.  I really can't wait to one day tell him how much he was thought of all the time, even by complete strangers.  He is a strong little guy and we continue to pray that his health at the least, just maintains.  I know there will be bumps down the road, but for now, things are just wonderful! 

Time is flying....

I just realized it's been over a month since my last post.  Where has the time gone??  Christmas was wonderful and Ashlee was really sad to put away all the decorations yesterday.  Time really is flying now and Christopher will be here in 16 days!!  I have had more doctors appointments in the last month than I can even remember to mention and fortunately after each appointment I have been relieved to hear that he is doing wonderful.  Nothing has changed as far as his dialated bowel which is good news and at the last measurement he was 5 lbs. 4 oz. which was perfect.  :)  I have two appointments this week and will get to see him on ultrasound again and then just one more appointment next week before his arrival.  My parents are coming down on the 14th and I can't wait to see them!  Nothing like being relieved that "mom" has arrived and can handle anything.  :)  I have some wonderful friends who decided that even though I didn't want anyone to go to the trouble, they are having a baby shower for me today.  With the holidays and it being such a busy time of the year I didn't want anyone to be troubled with planning a shower, little did I know they were conspiring and planning away.  I'm thinking Christopher is getting excited about the shower today too, he woke me up around 3:30 this morning with the hiccups and I haven't been able to go back to sleep.  He is probably just getting me ready for those middle of the night feedings again. 
Keep your fingers crossed that this weeks appointments continue to be nothing to worry about.  I just can't wait to have him here and hold him!!