Thursday, January 30, 2014

Anything Else?

Today was another productive and eventful day.  It was an argument between nurses and doctors over Cohen's oxygen or room-air flow.  Upon entering his room this morning we were advised that he was now going to receive 2 liters of flow continuously to help prop open his airway to treat his sleep apnea.  The talk around the hospital today was whether or not he needs the actual oxygen or just needs the airflow to keep open his airway.

The sleep doctor, who reminds me of who Mr. Sandman from the song would look like if you could visualize him (thick dark beard, soft spoken, and wears a bow-tie) came to pay us another visit.  He felt very strongly that Cohen only needed the flow because he has never needed the actual oxygen to bring him out of an apneic spell.  With this being said, the only problem is that the nurses protocol did not allow them to use only room air because that is something that can not technically be managed at home.  The current machines tend to be very large and do not travel easily, though he did say that they have since come out with a machine in New Zealand that will be available in March.  Cohen could be one of the first to possibly use it!  Through the day he seemed to be so much more peaceful.  His respiratory rate was the lowest I had ever seen and he was not breathing as noisily.  It just could be that all the little guy needed was a little more flow moving into him, but I wasn't completely convinced.

They were able to override the usual protocol for this floor and kept him on the room air for the remainder of the day.  We also were able to increase his feeds to 25ml/hour to allow us for more breaks at home.

Meanwhile the new idea on the table currently was whether or not we should have another look inside his airway one more time prior to being discharged just to make sure we are not missing ANYTHING!  They will be performing another bronchoscopy but this time the pulminology team will be performing the procedure with a more flexible scope to really go down deep and look at the anatomy of Cohen's airway and lungs.  It is possible they could find nothing but also very possible they could find something that is causing all of this drama with his breathing.  They will also be performing a CT lung scan to monitor how his lungs are filtrating the oxygen.  On top of that they want to extract any liquids from the lungs and send them off to the lab to check acid levels to finally determine whether or not Cohen has aspirated in the past.  All of this will be done hopefully in the realm of a few hours under anesthesia and hopefully we will walk away with more answers after putting our little guy through more procedures.

 As much as I am worried to agree to have him go under anesthesia again, at the same time there has always been a big part of me that thinks we have been missing something, that the doctors were missing something and just treating symptoms that have continued to return.  He seemed to have reflux so we treated it with medicine and he improved.  But we have never been able to calm down his breathing or determine why he does better on his tummy or sleeping on his side.  When Cohen received his last bronchoscopy, the ENT surgeons not finding anything was exciting, but also a let down.  We thought we were going to walk away with answers and reasons to why he breathed the way he did, but we didn't.  Throughout this entire process doctors have been convinced and sometimes had us convinced that they were about to find "the answer."  But every time, there was no answer.  There has been no light at the end of the tunnel on each of our discharges and I've known deep down that we were not bringing back a completely "figured out" little man.  I'm excited about tomorrow and what they may find and hopefully it won't be anything that we are not equipped to handle.  I'm also excited that we may finally get peace of mind that there really isn't anything else we are missing and we can sleep soundly at home hopefully for good!

Please keep positive vibes or prayers (whichever you prefer) flying our way tomorrow throughout the day.  We are not sure when the procedures will take place but will try to keep everyone updated as much as possible.

Wednesday, January 29, 2014

Too Many Cooks in the Kitchen, but one amazing nurse!

Today was the day I finally took a stand!  I know I have said in the past that I had to get tough with the docs, ask the hard questions, and demand answers!  Well today I finally felt like I actually did that. Before I would ask questions, but do it through sobbing tears, showing my vulnerability to the "head honchos." Today that all changed...I was one PISSED MAMA, but I can only attribute that to one amazing nurse!

After last night resulted in lack of sleep for Cohen and I due to the ineffectiveness of the three medication trials, we were basically back to the beginning again and still no answers.

We have had some rather crappy nurses, but for the most part we have been blessed with some amazing nurses. These nurses are the ones that bring comfort to you even on the most eventful days or uneventful days.  They know the right things to say when you are balling your eyes out with no answers.  They also are dedicated and will do whatever it takes to make sure that your questions are answered and that you meet with the people you need to meet with and not to feel embarrassed about it.

Today we were blessed to have our favorite nurse thus far in this entire experience, Sarah.  Sarah is a 26 year old nurse who is wise past her years.  She first had Cohen way back during the beginning of his second hospitalization and I could tell based on all she said and did, that she was not only an amazing person but great at her job!  She has been with us through the ups and downs and always made us feel like we were not asking dumb questions and also explaining each step, procedure, medicine, along this crazy process.  I remember one time she called me at home to explain the salivagram procedure he was going to have because she wanted to make sure I knew about it even though I wasn't able to be at the hospital during that time.  We have vented our frustrations to her regarding doctors, other nurses, etc and she has always been very professional about it.

Walking in today to see her in Cohen's room, I felt at ease but also felt like this was going to be a very productive day!  And it was!  After having discussions with her during her in/out visits into our room I was able to voice my concerns about: the lack of communication amongst the professionals seeing Cohen, the terrible night nurses we have encountered on a few nights, the terrible contacted oxygen provider we had been given through the hospital and many other issues.

Instead of many of the nurses trying to please their patients but also keep the peace in their job setting, she took action and I am forever thankful for that.  Throughout the day, people continued to filtrate in and out for various things I had addressed with her and it seemed like many more questions were answered than before and even though we are still unknowing of Cohen's condition, I felt at ease.

I met with the hospital case manager and addressed my concerns about our oxygen provider and how they have been nothing but terrible in their communication and customer service (that could be another blog in itself).

I met with the floor manager to address my concerns about the lack of diligence in some of the night nurses we have had before (really only a few but of course the negative experiences tend to stick more than the positive at this point).

I met with the pulminology team and the ENT team separately and felt completely lost afterwards.  They were both coming from two different angles and often leaving it up to the other specialty to make the call as to what the next steps would be.  We were back to blaming aspiration and reflux, even though GI had just said that they didn't believe this was due to that even happening. I was becoming more frustrated as some of the doctors were talking about not even wanting to do anything more to find out why he is breathing the way he is breathing, but yet we were still stuck here in the hospital!  I asked her what she thought about gathering a grand meeting with all of the specialists involved so that the communication could be strengthened, myths or theories could either be put to rest or tested, and we could try to come to an understanding because we were talking about an 8 week old that has only seen his home walls for 18 days of his life!  She heard me loud and clear and approached the resident who is nowcurrently working on making that meeting happen hopefully this week!

I am so thankful for her and even though there are many cooks in the kitchen I wish we could always have this one special nurse on the sidelines cheering for us!

More Meds...Guinea Pig!

Later on that evening Ryan went back into the hospital for his evening shift.  He had told his nurse about how when we took Cohen home he seemed very fussy and uncomfortable to due possible gas.  With g-tubes it is often that children can become gassy and the only way for them to relieve that gas is to "burp" them.  She suggested we do this with using a Farrel Bag.  Using gravity it looks like an IV bag that is hooked up to Cohen's gtube site and then when he needs to release gas it naturally pushes some of the formula back out causing him to burp.  He had a relatively mellow evening.

The following morning we met with the Pulminology team to get their insight into why we were back here again and why his breathing continues to be an issue.  They feel that even though we had the bronchoscopy earlier on (Dec) it seemed to show that his airway was clear; however, he could have possibly developed some bronchial malacia over time or there could've still been something that they had missed.  Since they said ENT didn't use a flexible scope, there could be a chance that the airway was just propped open, not allowing any anatomy concerns to be as visible.  They also thought that he could have this "floppy airway" farther down that where ENT had traveled.  Before putting him through another procedure and another incident of having to go under anesthesia, they decided that they would try two different types of medication they would give to asthmatic patients to see if that would stabilize his breathing more.

Later that day he received his first dose of albuterol.  In general, Ryan said he was a very ALERT baby, possibly due to the albuterol.  He was the most interactive Ryan had seen and was Mr. Smiles! We were pleasantly relieved and excited about this new plan from pulminology. If this was the reason as to why we were back in for another stay, we were happy to have more answers!!  The doctors seemed confident and we were all on the same page.  If this plan worked, then Cohen would be coming home with another med, but it would only need to be taken when his breathing was getting out of control and then we would not be having to come back to the hospital each time this happened.

Meanwhile the cardiologist has always adamantly stood by the fact that he does not need any heart medication (lasix) to help remove fluid.  He doesn't think his breathing is being affected by the small size of his VSD.  With this being said, he was pressured into trying out a trial run of lasix to rule it out, just because we are at the point now where having only spent 18 days at home is kind of ridiculous!!  We would also experiment with this to see if it had any improvement on his breathing.

So we gave it a try....and not surprisingly, they did not work! The poor little guy was WIDE AWAKE all last night to the point where he only slept for 2 hours due to the albuterol.  I understand that we are trying to figure out the cause to this breathing and how to best treat it but sometimes I wonder if our baby boy is the guinea pig to some doctor's ideas.

Monday, January 27, 2014

A Puzzle to Solve

Fast forward to a few hours later in the ER, and after answering the same questions for the millionth time:  What symptoms does he have?  What meds is he on?  Did you talk with ______? What did they say?  I was exhausted and instantly drained after our short 9 day visit home.  The list goes on and on and I was really starting to get sick of hearing my same answers over and over again!  They ran another chest xray and another panel to check for any viruses that he could've caught. At this point, I was determined that the results would come back clear with this guy's track record...sure enough they did!

So with a heavy conscious, the ER nurse said she didn't feel comfortable sending us home with his respiratory rate this high.  I knew going into the ER again meant we would be having another extended stay and that is exactly what had to happen again.

We traveled again back up to the 21st floor where we were greeted by our nurse.  Along the hallway walk Cohen smiled and I apprehensively waved at the previous nurses we had.  They gave us the look "why are you back here?" and all I did was shrug my shoulders.

It was very clear that everyone on the team agreed this was again related to reflux and that his breathing was very much sensitive to his feeds.  I was not convinced and really didn't think this was related because the bottom line was his breathing had always been an issue since the minute I first held him. The labor and delivery nurses placed him on my chest and he sounded noisy and was breathing quicker than your average baby.

But his team of doctors had always stood by their point that his breathing has always been said to have been related to his reflux.  The cardiologists team has always disagreed that his heart was related to his heavy breathing.  The pulminologists were able to find in our last stay he had sleep apnea, but still no answer to why his breathing is so erratic.

The plan was that we would talk to pediatric surgery to make sure that he was able to get the GJ(gastro tube put into the intestines) if that's what was decided.  He would need to be off of food for a given amount of time so once they got us situated in our room they put him on IV fluids.  Our poor little guy had to have another IV put in again, and this time was put into his small little foot.

Well we waited for pediatric surgery to respond to our numerous pages and they never did.  After a grueling day of sitting and waiting and crying, sitting and waiting and crying, I had about lost it.  My 8 week old, I had to remind them, had not eaten in over 28 hours and to wait for them to not even respond was ridiculous!  I guess instead of being so upset all the time, I just needed to get rather pissed.  Luckily we had an awesome nurse and she saw me crying and losing it and decided to page the resident again.  She came in after the entire day of doing the waiting game and said she was also waiting to hear back from GI because they also wanted to talk to me regarding what had been happening at home.

During our discussion with the GI doctors we again reiterated how we didn't think the GJ was a necessary fix to his breathing.  Yes, he did have reflux and was on meds for it, but it didn't seem as bad at home.  He hadn't been throwing up with the increased feeds and had never had a negative chest xray proving he had even aspirated. He had passed numerous procedures showing that he was not even aspirating while taking anything by mouth and since he was able to take small taste tests cleared by speech, going through with the GJ tube would be coming from an opposite viewpoint.  After they asked us countless questions and had looked again closely at his charts, they did agree with us on a few things.  Yes he had reflux but maybe not even extreme enough to be on all of these meds.  They also agreed that doing the GJ procedure would not fix his rapid breathing.  That has never been show to have been related to reflux unless aspiration has happened and they have never been able to prove it.

And so the puzzle has still not been solved on our special special boy.


So this post was supposed to be written awhile ago, but we had a whirlwind welcoming home of Cohen back on Friday January 17.  We were so excited to take our little guy home for the 2nd time and felt much more prepared even though we were coming home with more equipment (pulsox monitor and oxygen tank) as well as more meds (5 meds to be exact!).  We arrived at home with him hooked up to his oxygen travel tank they dropped off for us to take to the hospital.  It took us a few hours to get settled, luckily during Isla's nap, and then we awaited his large oxygen tank that was supposed to come from  the provider the hospital set up for us.  After hours and hours of waiting, pacing and starting to get a tad nervous about them delivering the oxygen, they finally showed up at around 9:30pm when our travel tank was about to run out.  The delivery man walks up our stairs and slides in a 50 gallon humongous tank that looks like a mini missile you would send into space.  He also brought the electric concentrator but proceeded to tell us the extra adaptor was on back order.  OF COURSE!  He asked where the child was sleeping at night.  What do you mean where he was sleeping at night? He sleeps all day and he doesn't spend his evenings alone in our living room. I had to hold in the tears and glanced over at Ryan and realized that this was our life now.  We had a humongous oxygen tank in the center of our living room for Isla to dance around.  I guess it would make a nice new centerpiece and she could use it for magnetic letters.

So for the previous 9 days our daily schedule has looked a little like this:
-Wake up in the morning in our bedroom with Cohen after Isla has woken up as well.
-One of us goes with Isla to get her morning milk and snack and we start a TV show for her to watch so we can settle Cohen in.
-Detach Cohen from his feeding tube, oxygen, and pulsox monitor.
-Drag his feeding pump out into the living room.
-Drag his 50 pound tank into the living room.
-Bring him out into the living room and reattach him to the oxygen and pulsox and feeding machine.
-Give him his morning meds (infant steroid inhaler, prilosec,, erythromyacin, and polyvisol) through his gtube.
-Love and cuddle on him all morning.
-Give him a 2 hour break from his food so that we can move a little bit off the couch, literally.  That has been the hardest thing in the transition home is trying to please a busy toddler, one who wants to go downstairs and play in her playroom, while having another child hooked up to 2 different machines during most of the day.  So the breaks are what provide our SANITY!
-Hook back up to his food after Isla gets put down for her nap and spend some quality time cuddling our little munchkin.
-Give afternoon med (erythromyacin)
-Spend more time sitting upstairs in the living room on the couch...
-Have another 2 hour break
-Give evening meds (infant steroid inhaler, prilosec,, erythromyacin, and zantec).
-Cuddle a bit
-Unhook him from his oxygen tank and pulsox, detach from feeding pump.
-Drag the huge tank back into the corner of our bedroom.
-Get Cohen situated and then try to sleep.

This schedule was crazy and was slowly starting to get easier day by day.  We had become timing addicts, timing his respiratory rate consistently and repeatedly throughout the day because that was the only thing we didn't have on a monitor at this point.  He was very consistent with his breathing and was doing well.  On Saturday afternoon, he took a sudden turn and we are still not sure why.  His respiratory rate seemed to increase into the 80's and was staying there on and off throughout that evening as well.

In the morning we called his pediatrician on call and she recommended we go back into the ER just to rule out he hadn't caught anything.
The ER was a whirl and of course again we were admitted due to his rapid breathing....

And the 3rd time's the CHARM right??

Tuesday, January 14, 2014

"Getting-to-Know" Cohen

As we start the third week of Cohen's second hospitalization, it is crazy to think that this little guy has spent the majority of his life in a hospital.  He has only seen the outside world for 9 days which is mind-blowing to Ryan and I because it seems like time has just stopped!  Part of it feels like it was yesterday that he was born, but then we also have become so accustomed to this way of life that we are used to the daily routine of going to/from the hospital.

After the recommendations were to put him back onto oxygen while he slept, there have been for the most part HUGE improvements!  He has not had any desaturations since then, so the plan definitely worked!  He is on the smallest amount of oxygen you can be on, almost just a flow to keep his airway open while he sleeps.

Two nights ago we were getting ready to go home and the plan was that on Monday we could take the little mister home once again!  He passed his carseat challenge with flying colors!  But later that night, as I was trying to sleep, his monitors continued to go off primarily due to his increased respiratory rate. He usually averages in the 30-50's while he is asleep and was breathing continuously in the 70-90's.  This did not seem right.  I called Ryan on the phone to tell him to plan for him to not come home so he wouldn't be disappointed.  My gut was telling me that because this was not his norm and hadn't been for a few days now on and off.   The morning came and the same issues were happening.  During rounds, they clearly were not comfortable with letting him go home. There was a new doctor on starting this week.  He introduced himself and said, "It's ok. I'll need some time to get to know him!"  That's when I lost it!  We were tired of "getting-to-know" doctors and almost wasting time here. Of course there was a reason for our second stay and we have found out very valuable information about our baby, but at the same time days drag by here and things take time.  I didn't want to be set-up for another week-2 week stay because a doctor needed to "get-to-know" him.  I began crying in front of the 5 doctors, residents, and support team in disbelief because part of me felt like we were never going to get out of here if we kept up this routine and cycle of doctors. It had happened before and due to his special needs, being so sensitive to positioning for breathing and food increase, it seemed like every doctor that has come into his life doesn't truly understand Cohen until they spend at least a few days getting to know him.  He reassured us that he would return in a bit to discuss this more in depth.

Meanwhile during all of this the contracted provider was in our room trying to show us how to use his new oxygen monitor and oxygen tank.  I was overwhelmed with emotions. Again we had this representative in our room training us on one more thing that we would need to help our baby.  How could this be happening?  She was talking and I was "listening" but nothing was penetrating my exhausted brain.  She mentioned that she had gone through similar circumstances with her child and now he was a healthy 20-year-old but her words were not comforting at all. I signed all of the paperwork and she left the room quietly.

A few hours later the doctor returned and re-read all of his files on the computer in his room.  He must have spent a good 20-30 minutes doing that and continually asking me questions. He was amazed by the amount of specialists we had seen, tests/procedures we had been through and that we were still here!  He spoke to us for another 30 minutes about his philosophy on Cohen and how this could go.  He told us that all babies do better when they have more weight on them and that many of these problems (breathing and reflux) could be improved with weight gain and time!  On the other hand, if he has gained weight or not gained weight over time and he is still having numerous issues and being very sensitive to food and positioning for breathing we would need to explore options that may be a bit more invasive. I'm not even going to list these things because they won't be happening!  I'm positive and Ryan agrees that once we get this little dude home in a nurturing environment that the haunting sounds of monitors and nurses doing their vitals will be all in the past!  He also mentioned that although Cohen has his ups and downs he technically could go home, it's just going to be a day-by-day scenario.  He reminded us that he has spent the majority of his life in a hospital bed, and although they can make sure he gains weight in the hospital, the benefits of being at home are so much more!

The other main thing we discussed was that we need a "POINT PERSON" to address Cohen's day-to-day needs.  He will eventually need to change his feeds to increase his calories and that could be a battle.  There will be days when he will be breathing faster and more labored than others. We needed someone that we can turn to that would know Cohen, what he's been through, and who would know his baseline when it comes to these things.  We completely agreed!  There has still never been that person or small group of people that we could turn to through all of this even when we were home during our short stay.  Luckily the group of pediatricians that are Cohen and Isla's doctors due see some patients in the hospital under another service.  He was unable to see them through all of this due to hospital bureaucracy and protocol.  But by transferring him to their service and if they could "get-to-know" him over just a few days and as long as he behaved himself we would be better prepared to go home.  It sounded crazy signing up for another few days in the hospital, but by doing this we may save ourselves a few hospital visits in the long run.  Now we would have a group of people who already were his pediatricians and would also be there for those 2a.m. phone calls that would come.  We would be able to trust that they knew Cohen and could give us the proper advice when we needed it! I was very content with our plan and truly appreciated this doctor making these arrangements. He seemed like the first one we have seen here that truly cared about getting us home and also took the time to "get-to-know" Cohen even if it were for 1 day!

Friday, January 10, 2014

Mr. Mystery Man

Cohen has officially earned "Mystery Man" status!  Since my last post so much has happened.  He continues to amaze us by his strength, resiliency, and puzzling aspects of himself.

After talking with the pulminology experts and hearing their recommendations, the team decided we should do the sleep study since most of his desaturations of oxygen occur during sleep.  He was hooked up to a series of monitors and extra leads that were placed all over his small head with a cap on top.  They wanted to see if he was having episodes of apnea and also how much oxygen he was really losing while sleeping, since sometimes the monitors tended to be a bit off.  We also wanted to see if there was a correlation between reflux episodes and his desaturations or was this related to something going on with him internally while he sleeps.  The results would take a few days to get back.

Also on the same day he began taking a steroid inhaler treatment three times per day to help with possible inflammation of his lungs.The inhaler mask fit around his nose, mouth and rested over his eyes.  The respiratory tech forced this on his poor little face while he proceeded to turn red and was screaming, but then eventually took a few deep breaths.  I keep reminding myself that he will never remember these moments of torment as much as we do.  Each time he is administered another medicine, my stomach churns wondering if this medicine is even doing something to help him, or is this just another trial and error idea from the doctors.

He also had a repeated chest x-ray the previous day just to double check he had not aspirated.  The chest x-ray was taken from the side as well this time and it showed that his diaphragm seemed to be slightly elevated.  They wanted to talk more about this tomorrow.  I was thinking about this on and off and decided to do some research!  I pulled out my 22Q book and decided to research diaphragm.  In the index, diaphragmatic hernia came up and next to it is said (rare).  When I saw this, my mind instantly started racing and thinking...this could be it!

Upon turning to the page symptoms listed were as follows:
-rapid breathing/varied
-noisy breathing
-mom's tend to have polyhydramnios (had that)
-tucking in chest when breathing
-intestines are pushed into lungs (definitely didn't have this based on previous chest x-rays).

Everything seemed to match up and I knew this had to be the answer to the last month and a half of mystery.  I rushed into the hospital the next morning for rounds to approach the team of doctors with my hypothesis and sure enough they were already thinking the same thing. They noted how impressed they were with the research I had done and everyone agreed....this was it!

That evening Cohen had a rough night having anywhere between 15-20 desaturations.  It became a routine.  He would or would not cough (the reflux choking, hoarse cough), and then within a few seconds everything on his monitor would go haywire.  His heart rate would fluctuate and his oxygen would then plummet.  First the "warning" monitor we call it would start to ding and this would be followed by the "holy s#4%" monitor which usually proceeds to ding louder and louder until the nurse walks in to check the monitor and silence it.  This routine happened every 15 minutes between the hours of 9pm through 1am.  Each time, Cohen would bring his numbers back up on his own without any assistance or oxygen needed, but it was still frightening each time it happened.  It got to the point that the nurses didn't even want to come in and would let the monitor go off and off till I would have to come in.  I was exhausted and emotionally drained from all of this.  As I was sitting in the dark room crying my eyes out about how one more thing could go wrong, my baby boy was sleeping through all of this!  I got off of the pull-out couch in our room and went over to look at him after the nurse left the room during one of his episodes.  He was swaddled in the hospital blanket, eyes wide open and staring at the ceiling.  He was so peaceful, thinking his peaceful thoughts and not about the chaos that was going on around him and inside of him.  I broke down at the edge of his hospital bed wondering how I could manage doing this another minute but he reminded me that he was doing just that!  This little guy was and is fighting a battle inside of him every day and even though we may not yet have the answers to why he is presenting these issues he has, I know that I need to continue to stay strong for him.  In the end, we hope that we can put an answer to the symptoms he has but for now he is still the Mystery Man.

This morning I was awaiting the results of the diaphragm ultrasound as well as the sleep study results.  The resident came in and told me the was not great.  The ultrasound showed that it was normal, he did not have a diaphragmatic hernia.  My day was shattered and I had to try to hold it together since I had felt so relieved from finding this information.  How could this be?  We still did not have an answer for the rapid breathing, the inconsistent breathing, the noisy breathing!  Then came the news about the sleep study.  It seemed that Cohen had Obstructive Apnea.  During his sleep study they found that he was having moments where he would stop breathing but also moments of desaturation of oxygen.  These moments did not last long and were very short, but what was worrisome was he was having many of them!  They were meeting with the sleep doctors later today to discuss plans moving forward but they had two ideas currently as to how to approach this new knowledge.
1. We would need to have Cohen on a small amount of oxygen to assist him while he sleeps (which for a newborn is pretty much all day).
2. There was talk of possible plastic surgery!  Yes, "they are crazy if they think he will get plastic surgery" is exactly what I said.  Apparently due to his small facial features and slightly inverted chin that may be causing his body to cause the obstruction, pushing his tongue backward while sleeping.

Luckily no decisions had to be made right away and we would most likely start with the oxygen. Their goal is to get us home as soon as possible and that is ours as well.  For now the Mystery Man is still waiting his diagnosis.

Wednesday, January 8, 2014

15ml to 18mls = TOO MUCH VOLUME!

So after our relaxing day of tummy time and good sleep, Cohen began showing signs of needing to stay just a bit longer.  We were feeling positive and hopeful that he would only need a few more days of pampering here, but he felt otherwise.  He was finally allowed to have an increase in food by 1ml and did that for about 12 hours with consistent and impressive behavior!  No desats and not much refluxing.  As I've been getting very fidgety being in the hospital, I paged the doctors to see if we could go up in his feeds, just that one itty bitty drop to make it a good 17mls/hour and they agreed that would be fine.  He seemed to do well all night but by morning there had been some changes.  His numbers on the monitors were fluctuating a lot and his heart rate was up slightly. I picked him up and was trying to calm him down and he began to cough and then threw up on me.  This was a first because he has never thrown up before during a reflux episode.  He also had a desaturation.

Later that morning they decided to take another chest xray to rule out any aspiration. It came back clear and looked better than the one upon the day we were admitted.   The team during rounds also discussed possibly changing up the level of calories he would receive so that we could lower his volume.  It seems that his volume was adding to his reflux and desat episodes. He was tending to have desats after lying down on his back from a diaper change, weight check, etc.  I insisted that the nurse put up a note on his bed reminding anyone that works with him to keep him upright as much as possible since it's affecting his breathing.  Because he was starting to have more desaturations, the team ordered a salivagram.  This was similar to the swallow study he had done early on, but would look at how he was swallowing his own saliva and if he was actually aspirating that.  During the hour procedure, the tech let us know that he was not aspirating at all based on what he was seeing; however, the doctors have yet to receive the final We have been begging and pleading to also get another specialist involved that we have yet to see: pulminology.  Based on his often rapid and labored breathing there have still been no answers to this and because he has been doing it since birth, it's likely it's not related to all of his reflux issues.

The pulminology team came in with a great plan to help rule out any respiratory issues.  They think that because of his constant reflux he may have slightly aspirated and that could be the cause to his labored and inconsistent breathing....but I'm not sold!  So they wanted to put him on a steroid inhaler to help minimize any swelling of the lungs if he did have some.  They also mentioned that because most of his desaturations are happening during sleep he could benefit from a sleep study to see if he may need oxygen while he sleeps.  This would mean coming home with yet another machine for our little guy.  They also agree with the team that this may probably be resolved once doing the g-j surgery which would be in another week and a half.  If that were the case, many of our problems would be solved at that point and hopefully we can all go home!

Sunday, January 5, 2014

Tummy Time

Yesterday we finally were able to meet again with his doctors after they had been given the list of recommendations from the GI doctor.   They agreed to make all of the necessary changes to his care.  He would be switching formulas, not sure of the name, but this would hopefully help with his gas.  We would also be trying a motility drug (Erythromycin) which would hopefully help with keeping his reflux to a minimum.  This drug is an antibiotic but helps clear out the stomach more quickly to minimize reflux in kids.  They wanted to hold off on upping the quantity of feeds quite yet to give the medicine and other changes time to take effect.

Per Ryan, he had a glorious night of sleep at the hospital which is a first in a while!  Baby and Daddy both woke up refreshed and vitals stayed smooth the entire night.

It is Day 6 of being in the hospital and I'm realizing that time is just flying past me.  He is already 5 weeks going on 6 weeks old and we have yet to do anything to enhance his development.  With having this diagnosis, 22Q, children tend to be slightly delayed in their speech and physical development.  With the odds against him, sitting in a bed over the past 5 weeks has only likely to have added to his delays.  He had his gtube surgery almost 3 weeks ago and since then has been limited to only sitting on his back (in an elevated position).  He sits in his bed or snuggles with us but has pretty much spent most of his life lying in this dingy hospital bed.  After his morning bath, I asked if we could do some tummy time. The nurse verified it was ok with pediatric surgery and we had his FIRST TUMMY TIME at the edge of his hospital bed!  He was so comfy during it he passed out!  Unlike his sister Isla, this little guy may be more comfortable on his tummy than she was.  We lasted for about 10 minutes and he was spent!
Currently he is sleeping off his long workout!  I'm still waiting for doctors to come in and let me know if we can increase his feeds yet to the total goal of 18ml.  Currently he is eating 15ml/hour and though it is only 3 more ml to go, they are concerned that he will not be able to handle the increase.  My main goal is obviously to get this little guy home!  So if we need to make sure we are getting this done properly than I appreciate the concern to move slow; however, every day-hour-minute more we spend here is one less day-hour-minute I get to spend with my baby at home!

Friday, January 3, 2014

Purple Wristbands!

It's been a few days since my past post and we are still in the hospital.  With arguing back and forth between nurses and doctors on the Cardiac ICU floor, they finally decided to move us back up to another floor because his cardiac issues are not issues at this time.  So now we are starting to see all colors of the rainbows and have changed out our grey wristbands to purple!  Yeah!

The only issue with moving off of the 15th floor is the nurses instantly become nervous to take on a cardiac patient.  They are very fidgety around him and his monitors are constantly sending off alarms because they are not used to him.  The nurses/doctors are used to their kids breathing at a higher respiratory rate so they change the thresholds the monitors will take before setting off an alarm.  When Ryan was there for the move upstairs and finally was able to convince the nurses to increase his thresholds so that the monitors were not continuously going off.

Also with moving to a different floor comes less urgency to send this guy home.  There are no current goals and it's almost like we are going through the motions.  The GI doctor who was supposed to come by yesterday did not and is planning to come today.

He had an ok night, definitely seems like he is more gassy and possibly constipated but only had one desaturation!

Rotating back and forth, today is my day to sit in the hospital and hopefully get a little pushy.  I walked into his room and he is sleeping quite peacefully and breathing calmly as well.  His nurse entered the room and felt differently saying that he is breathing hard.  I reminded her that he was sent home from the cardiac floor breathing like that and then she stopped talking.  

We will see how today goes, but my goal is to get some questions answered and find out who is in charge around here!

Wednesday, January 1, 2014


The past two days have been very up and down and spontaneous.  After settling in to hopefully our more permanent "home" while still in the hospital on the 15th floor, Cohen has continued to show signs of very bad acid reflux.  Yesterday they began to feed him again after giving him a large helping of his reflux medicine.  They decided to start him off very slowly with about 10ml/hour continuously and then give him 2 breaks throughout the day to see if that would help with his reflux.  Yesterday and all last night he seemed to tolerate the food well and was very comfortable based on his monitors and behavior.
But of course, when Mommy walked in the door this morning, that all changed!  Upon walking in the door, I always like to check his vitals, as if I too were a nurse.  At this point with the amount of time I've spent in these cubicles they call hospital rooms, the terminology and vocabulary I've acquired, and the times I've known more than them...I'd say I've slightly earned that title!  His heart rate was slightly high and he was not hooked up to his feeding machine. This could mean one of two things: either he had a desaturation in oxygen and they needed to stop his feeds, or he was on a scheduled break from his feeds.  The nurse popped in and confirmed he was on a break...a 6 hour break!  This seemed a bit bizarre because what baby feeding via mouth or tube would want a 6 hour break.

At rounds I asked what the philosophy was on this and they didn't seem to really have an answer for me.  One doctor looked at me dumbfounded and said, "Well that was in the notes from the nutritionist."  Another one commented that yes that did seem bizarre. After 10 minutes of looking at each other back and forth, they decided to start up his feeds again immediately!  They also thought that he may be a bit dehydrated and some more IV fluid may help to bring his heart rate down.  We also discussed using a steroid that could help lower the swelling on his throat.  They agreed that as a team they all felt that these feeding issues were related to the reflux, not an anatomy issue.  The reason for his respiratory issues and oxygen issues was due to the swelling from the reflux.  The plan was that we would continue to feed him small amounts over a long period of time and monitor his reflux and oxygen desaturations.  If he was not able to tolerate this, we would need to consider the gj tube surgery; however, this surgery would have to wait for at least 3 weeks because his previous surgery wasn't even healed yet.  The other option they mentioned was to put in a ng j tube which is pretty much the same thing as what he had previously through his nose but it would also go directly into his small intestines.  There was no way this was happening because this kid had already had the ng tube and that is why we were at this place now. He couldn't keep his hands off of it for more than two seconds and his nose became so inflamed and swollen from all of the in and out.  But at the same time, if he wasn't able to get nutrients, that would have to be our fall back plan if nothing else were to work.

As they all scurried out of our room, I began to feel helpless.  This was not working! We were hitting road block after road block and this was the first time I felt that I knew more than some of these doctors. They didn't seem to know all of the answers and they were running out of possible scenarios.

Luckily I have a very smart mom who used to be a nurse. After filling her in on the phone, she suggested we bring in a gastrointestinal doctor since we have yet to meet with one.  I started researching some on the computer so I could be better prepared the next time they came around for rounds.

A few hours later he began to really struggle through the feed.   His oxygen continued to decrease and he seemed to need constant repositioning to keep his monitors comfortable. I say his monitors because if they weren't in the room, you would've never known that this child was having issues inside.  He was sleeping so peacefully and through constant desaturations in his oxygen.  The nurses were amazed at this and said that usually when kids do this, they tend to be awake and/or get very crabby.  At the time this started happening, his cardiologist came in to check on him.  He has been thinking a lot about Cohen and suggested that we really get  GI doctor in to see him and help us get a plan for improving his reflux as much as possible. He had read my mind and I was so thankful that someone had my back! He had already put in a call to their office and they would be coming tomorrow, since today was a holiday, to see him.

Throughout the afternoon, we played a tricky game of how to position the baby so his monitors wouldn't go off or he would at least correct his loss of oxygen and change of heart rate.  It is currently 10pm and he has already has had his first desaturation since starting his food 40 minutes ago.  It's going to be a loooong night!