Pinch me - I must be dreaming!

I hope everyone enjoyed a wonderful Thanksgiving holiday!  We certainly have plenty to be thankful for this year and loved spending time with family.

Joshua has been doing well with his new PICC line and the original insertion site in his scalp has healed very nicely so no more concern with possible infection there.  The consistency of Josh's stools did not bounce back the way I expected after he was taken off the antibiotics for the wound infection.  The doctors now think we have hit a plateau with the amount of milk Josh's body is able to tolerate.  We have been stuck on a 45 cc for closing in on two weeks.  Instead of going up by 5 cc's every 4-5 days, it now seems we will be waiting at least two weeks for every increase to give Josh's intestines time to adjust.  Since at his current weight he needs to get well over 100 cc's to be considered full feeds, we have a long way to go.  David and I were getting very discouraged at the beginning of last week with our glacial progress and thinking about how many long months in the hospital were still ahead of us. 

On my way out the door to meet David to watch the Georgia/Georgia Tech game, one of the neonatologists stopped me to discuss how she thinks we need to move to the GI floor before going home so we can get to know them and vice versa since Josh will have follow up appointments with the GI specialists.  This is the first time I had heard about moving and it upset me.  We have become very close with our NICU nurses and doctors and have no desire to move to another floor where we would be forced to get to know a whole new staff and their policies.  I envisioned us finally leaving the NICU to a standing ovation with confetti falling all around as we wheeled Josh out of the unit.  (This is not likely to actually happen, but is fun to daydream about).  Our nurses were also upset by this suggestion and lobbied the other neonatologist, Dr. Piazza, to have us stay put.  It seems like we all got our way since we are staying put for the foreseeable future.  (For you Braves fans - every time I hear Dr. Piazza all I can think of is that scruffy Mets catcher that gave us fits for years, not the image you want for the person treating your child.)

Now comes the pinch me part - Dr. Piazza started talking to me about possibly going home by the end of next week!!  Seriously?!  Josh will definitely be going home with the PICC line and I will be responsible for providing most of his home healthcare including hanging his TPN fluids, changing his PICC line dressing, maintaining an infection free PICC line, and monitoring his progress as his milk and TPN levels fluctuate.  It is more than a little intimidating, but I would walk through fire to get home at this point so once again I say - bring it on, let's do this thing!  Josh will go home on fluids for 20 hours a day and off for 4 so in the beginning we will get 4 hours of freedom.  He will slowly work up over the course of months to being on for 12 hours and off for 12 hours.  And someday we will eventually get him off the fluids altogether.  I have no idea how long that will take, but it doesn't much matter as long as we can do it from home! 

I am not getting my hopes set on leaving next week.  Different doctors have different opinions and our head doctor is not returning until Monday.  She will be the one to make the final decision.  I have a hard time believing she will come back in the rotation on Monday and discharge us by Friday.  Just knowing our discharge is weeks, instead of months away, is intoxicating.  It really does not seem possible.  Now David and I are scrambling to get all of our ducks in a row at the house before the long awaited event actually happens.  It hardly seems real.   

Stay tuned for more details early next week!  

PICC line shenanigans

David arrived Friday evening for a much anticipated 10 day Thanksgiving vacation at the stately Chateau Egleston.  We were able to sneak out of the hospital for a late dinner at a nearby Chili's (thank you Katie Anguish for the thoughtful gift card!) and enjoyed a nice beginning to David's stay with us.  Then we arrived back in the NICU to a stomach clenching, but familiar sight - a hubbub of activity outside Joshua's room and the mobile x ray machine being rolled in.  What in the hell is going on now?  He was fine when we left less than two hours ago!  Unfortunately, we have been through this situation multiple times before so it was a very unpleasant deja vu for us.  Our nurse stopped us outside the room and explained there was concern Josh had a PICC line infection called phlebitis because the skin surrounding the PICC line insertion was red and irritated and a nodule had formed at the insertion site.  She had a very serious look on her face as she spoke to us and I knew an infection in the PICC line vein is a very dangerous thing since the PICC line is threaded all the way to his heart.  On top of this, she told us Josh was already on the antibiotic that would be prescribed for phlebitis.  This was extremely alarming news to me since the antibiotic that should work obviously was not preventing the infection from forming, if it really was an infection.  So what would we do if it was phlebitis and vancomycin was not effective against it?  Our nurse did not have an answer and panic started setting in. David took the news especially hard and had to sit down at the nurses desk before he passed out.  I rushed in to check on Joshua as two of our nurses took care of David getting him an apple juice and an ice pack for his neck.  He recovered quickly and we tackled this latest obstacle. 

Josh had to have the PICC line redressed three days in a row starting on Wednesday which is a very unusual circumstance.  Typically a PICC line dressing lasts at least a week and sometimes several weeks before redressing is necessary.  Josh has very sensitive skin and I suspected all the dressing changes which require pulling up on sticky steri strips and tegaderm irritated Josh's skin.  His heart rate, temperature, and temperament were normal.  Placement of the PICC line is almost just as important as keeping it infection free since only proper placement insures Josh is receiving his nutrition and medicines.  The PICC line had continued to inch out with every dressing change so now the placement was in question, too.  It was looking like Josh was going to need a new PICC line which is a bit of a production.  We ended up sticking it out until Sunday morning then there was blood coming out of the insertion site under the dressing and the day got really interesting.  A pediatric PICC nurse was brought to put in a bigger, stronger pediatric PICC line.  I discussed with the PICC nurse which option: scalp, arm, or leg made the most sense for Josh's new line.  Arm was her preference since the vein was big and easily accessible.  I was either for another scalp since this seemed to stay out of the way or leg since then at least we would still be able to fully dress him.  With the PICC line in his arm, we are not able to get his sleeve on and off that arm.  In the end, it wasn't really my decision so when we were allowed back in the room a few hours later, Josh had a new pediatric PICC line in his right arm.

Sporting my new PICC line and a bandage over my old insertion site.

The old scalp PICC line was pulled after confirmation that the new line was properly placed.  We are still getting used to handling Josh with the arm PICC instead of the scalp PICC.  It is a much sturdier line so you don't have to be as worried about how fragile it is.  A big downside is the fact that he has to wear his clothes with his right arm out.  Know anyone that makes baby togas? 

Watching the UGA game in my new jersey on Saturday before the PICC line shenanigans.

In very positive news, Josh's wound seems to be healing nicely and he was finally pulled off the antibiotics after the fear about the phlebitis infection subsided.  He is currently taking 40 cc of milk every 3 hours and we are hoping for 45 cc tomorrow.  Joshua is a big growing boy up to 11 lbs 10 oz and over 24" long.  He is talking up a storm and really showing his adorable personality. 

Our favorite doctor, who happens to be the head of the whole NICU, is working this week (she has been off the rest of November).  I am hoping to corner her to pepper her with questions and what if scenarios in an attempt to figure out when Josh might possibly be allowed out of here.  Is there any chance we could make it home by Christmas?  Please, please, please, please let it be so!!!!

Josh hamming it up for the camera during his bath last night.  Our nurses gave him his first mohawk!

Infections really really suck

After Joshua had the procedure last Tuesday to open up the right side of his wound to allow the infected pus to drain out, we expected that would be the last step to finally get rid of his persistent MRSA infection.  Everything seemed to be going according to plan the rest of the week as the wound cleared up and no more pus came out.  Then came the weekend and the opposite side of the wound, the left side, started looking suspiciously red and a little shiny.  We were immediately concerned, especially since Josh seems to prefer to get sick at night or on the weekend when the doctors are not available, but his temperature and heart rate remained stable so we were cautiously optimistic it was just a skin irritation like the nurses suggested.  Of course this was not the case since our little family cannot catch a break like that, it always seems to be a worst case scenario with us.  When the surgeon saw his wound on Monday, she was shocked how different it looked from Friday.  She promptly squeezed pus out of the right side of the wound then called for her surgical kit so she could open Josh up on that side.  The procedure was much worse on Josh this time around for some reason.  I was forced to hold his legs down so he couldn't kick while the surgeon was cutting.  Despite the pain medicine, he screamed the whole time and his heart rate skyrocketed.  And all the while I had to keep his legs pinned down with blood running everywhere so the surgeon could see what she was doing.  It was awful.

The wound looked better on Tuesday so our surgeon just repacked the wound and no additional cutting or squeezing was required.   Joshua watched her like a hawk the entire time, it was pretty funny because it seemed to disconcert her.  He just stared at her face as if to say "come on lady, just try to poke at me today".  We again desperately hope this is the last procedure required to FINALLY get rid of this miserable infection.  Josh is back on the antibiotics for at least 48 hours and then their need will be reassessed.

On the feeding side, things continue to go well so we remain very thankful for this.  Josh is up to 35 cc's every three hours and the doctor plans on going up to 40 soon.  He accepts each new amount readily, he is a hungry little fella.  Still no word on when we could possibly skip this joint.  Thanksgiving decorations went up last week. 

The photos below were taken by my sister-in-law, Anne.  The pictures are very precious to me since they accurately portray Joshua's sweet spirit and how incredibly essential he is in my life.  I am smitten with him.

Having beautiful pictures of Joshua taken is just one of the many, many things I will miss with my brother's family moving to Texas next week.  Many happy memories have been made at the Decatur Manning house so it was a little sad to go there Sunday for a last dinner of delicious chili and cornbread.  I will miss you guys so very much!  I wish you the best as you start your new life in Texas (and you better visit often)!!

Infections really suck

Joshua has continued to have daily visits from our surgeon to squeeze on his belly and apply silver nitrate to the over granulating tissue that is preventing the wound from healing properly.  We were excited on Monday because Dr. Bhatia decided she did not need to take Josh to the A side to open the wound up more.  Unfortunately, our excitement was short lived since he ended up having the wound reopened on Tuesday after more pus came out when the wound was poked and prodded.  Josh received a dose of morphine and a topical anaesthetic before the doctor cut open the left part of the wound.  She cut out a stitch that she thinks may have been a source of irritation and searched for any remaining pockets of pus.  Dr. Bhatia is hopeful allowing the left side of the wound to drain for several more days and continuing the silver nitrate process will be sufficient to finally heal his stubborn wound.  She also collected a wound culture so we are waiting on the results from that.  We may hear something today about the culture since it will have been 48 hours.  Josh is currently on isolation because of the MRSA which means he cannot leave the room.  I am so hoping we can get him off isolation soon so he can go back outside and to the play area.  Two negative wound cultures are necessary in order for him to gain a small amount of freedom back.  I am so tired of fighting this sneaky infection and even more tired of hearing our surgeon call this the peskiest wound infection she has ever dealt with.  Please, please, please let this be the end of our relationship with MRSA. 

Josh's last dose of antibiotic was earlier in the week.  As expected, his poops are getting much better now that he has been off the vancomycin for a few days.  This is great news and is part of the reason his feeds were increased to 30 cc's yesterday - a whole ounce of milk every 3 hours!  And we finally got the much anticipated news that the rate of Josh's IV nutrition is being dropped.  This is also a necessary part of the equation for bringing Josh home.  We won't know how much of the milk Josh is actually absorbing until the IV nutrition is lessened and we see whether he still continues gaining weight.  He is currently up to 10 lbs 8 oz and stretching out like a weed!  He is long and lean like his Daddy.

Josh's diaper rash is still a problem since he had to go back on the antibiotics.  We are continuing to do the "oxygen therapy" with him and it is working well.  He finally managed to poop in the oxygen mask the other night and it was quite a production to get him and the crib cleaned up afterwards.  A few towels, blankets, and the oxygen mask were trashed by the time we were done.  I snapped a few pictures with him laying in the crib with his little robe on, but I will not post the image showing everything since I don't want Josh to be embarrassed ten years from now.  I do have the full length shot, though, and will use it to bribe Josh once he gets older!  

Josh celebrated his 3 month birthday on Halloween.  It is hard to believe he is already 1/4 of a year old (and that we have been in the hospital that long).  Since he is on isolation he was not able to parade around the hospital showing off his adorable bat costume.  Plenty of nurses came to see him, though.  Apparently he was the talk of the NICU!

One of the most frequent questions I get asked is when we are going home.  The only estimate I have been given was by our surgeon the day of Josh's last surgery when she was giving us the short gut diagnosis.  At the time she estimated another 2-6 months before we can go home.  Now that we are a month out from the reconnection surgery, I have started quizzing the neonatologists about where in this 2-6 month range our homecoming will fall.  I am not receiving any good answers.  It is simply too early for the doctors to estimate so they are very hesitant to give me any kind of date.  I had a dream one of our doctors told me Josh could not go home until he got teeth, but I have been assured teeth are not a requirement for discharge - thank God!  So for now we keep taking things one day at a time which turns into one week at a time and eventually one month at a time.  The seasons just keep changing outside our small hospital room window.

Josh in his first Halloween outfit.