our (long) story for January

On January 13th I walked in to my room to get T up from his nap.  He was in the pack n play.  I walked in to a bloody mess on the sheets and on our baby boy.  Trying to stay calm and figure out what happened, I concluded that he had gotten a bloody nose and from the looks of it probably from tying to pull up to standing.  He must have fallen and hit his nose pretty good on the not so soft padding of the pack n play.  His cough that had been going on for 2 weeks had subsided earlier in the week but that night came back full force.  On Saturday morning his nose started bleeding again while eating breakfast and again while playing on the floor.  At that moment, I looked at Rob and we decided that we needed to call the doctor.  After trying to reach the "nurses line" on base several times and getting nothing, not even a ring tone.  The only option left for us was going to the ER.  I haven't ruled this as a bad decision but still not willing to call it a good one either...

When we got to the ER, Thomas had just fallen asleep.  Because of this the nurses thought he was lethargic.  Because of his usually loud breathing, snoring and wheezing, the nurses thought he was struggling to breath.  His O2 Sat was in the low 90's (we have since found this to be Thomas' normal range), so we were rushed in, O2 administer, blood draws, breathing treatments, x-rays, shots, residents, doctors, nurses, respiratory therapist, x-ray techs... all rushing around me before I can even stop to think let alone take a breath.  Thomas now screaming, shaking and coughing more had no idea what was happening and either did I.  Everyone kept asking me what I brought him in for.  "a cough and a bloody nose"  Every time I repeated myself as to why I brought him in, it made me feel worse about having actually brought him in.  "Fever?"  they would ask.  "nope, no fever.  Just a cough and a bloody nose."  As they continually poked him with little success for actually retrieving any blood, I felt worse and worse.  The nurses, trying to start and IV had tried at least 5 times in different parts of his body and couldn't get it started.  Finally they got one started in his head.  They could flush it, administer meds and fluid through it but couldn't draw any blood from it, therefore the poking for the needed labs continued.  They did get some blood but that blood clotted or was contaminated and they'd have to go back for more.  As a nurse, I'm OK with blood and needles but after this I never want to see them near my child again.  Ever.  Maybe I'm being over-dramatic but it truly was awful.  Thomas, in his first year of life has had 4 different blood draws and 2 different IVs.  I have been there for most, Rob was with him for the others.  He's always been a hard stick but it's always been successful and Thomas has always been a champ.  He's a tough cookie.  His left arm has always been the arm to deliver the goods.  Lab techs and the nurses at cooks have always done a good job and gotten the job done. When I tell them what has worked in the past with Thomas, they listened, they got blood.  As I tried to explain to the Nurse Thomas' history with blood draws/IVs she looked at me and said, "we'll let the nurse do her job"
Fine lady, I don't mind letting the nurse do her job.  In fact, I usually love when Nurses do their job and watching nurses do it well too.  I will say, I'm a critic.  I watch and make sure they are doing their job.  I can't help it, I try to be understanding and know that I am not in their shoes but I also don't like being talked down to either.  Also, if the nurse would have actually gotten the job done, then I might have not tried to explain Thomas' history!  No one listened though and my son paid for it.  They kept telling me he was dehydrated, one nurse said that his fontanel was sunken in.  It wasn't, believe me I've been checking for weeks.  While one of the many residents said his fontanel was closed, it wasn't and still isn't.   During his 3rd attempted blood draw, Thomas was starting to become much more agitated, with good reason.  I asked the nurse how I could help, maybe by holding his arms or body, to help with the success of finally getting blood from him.  She looked up and told me there wasn't anything I needed to do and said, "he isn't a fighter."  I felt speechless at that moment and the only thought that went through my head at the time was YOU don't know Thomas then.  I really, really wanted to pick up my strong, tough, fighter baby and walk out of the room.  At that point I had seen 4 different residents, a Doctor, therapists, x ray techs, phlebotomists, ER nurses, Pedi nurses and had told Thomas'  Medical/life history to each one of them because no one seemed to be communicating to each other to figure out who they were "caring" for.  They each asked me the same questions or assumed with the same comments, then wrote notes on a little rectangle piece of paper.  At some point I wondered why they didn't have a chart for each to read so I didn't have to keep repeating myself.  But, maybe no one was listening to me anyway.   They have "standard procedure" to follow.  In our case, their standard procedure wasted a lot of time, money, and unnecessary pain.

**I do not mean to talk down about the staff of the hospital.  I'm sure they are good people and had good intentions. I only want to vent my view of how everything happened.  I will at the end of this talk about the positive aspects of the whole experience.**

After a while of being in a room with a man who was throwing up on the other side of a curtain they finally sent us up to Peds.  Thomas passed out on my shoulder on the way up and slept for a long while.  He looked more like himself when he woke up and after a little milk and food, I was able to get some smiles out of him.  I could tell details of the next 48 hours but it'd be much of the same.  I do understand why they kept us there so long.  They were waiting for his blood culture to come back.  They ruled out Pneumonia that first day and diagnosed him with bronchiolitis but still had him on antibiotics, steroids, IV fluids and breathing treatments.  In the end, a bacteria did grow in his blood and we left the hosp. with antibiotics, steroids and breathing treatments.


While the hospital visit had it's trials, it wasn't fruitless. Rob and I noticed over the 3 days/2 nights that his O2 Sat was always in the low 90s and at night he would even dip into the upper 80's unless he was given Oxygen.  We thought this would be a good thing to talk to Thomas' Doctor and ENT about.  It was good he was being treated for the bacteria found in his blood and we realized that the steroid really helped his cough.

T, after being put through it all, in the ER

Admitted to Peds unit

in his crib

waiting to eat

Smiling for Momma

Not so funny Momma

The Hospital trauma wears off

thankful for smiles!

talking with Mom

so glad to get a giggle!

playing with his hands

he is always fascinated with his hands!

The second night at the hospital, Thomas' IV ran out of fluid and the nurse forgot to come and put a new bag in.  As a result Thomas vein clotted off and they thought they would have to re stick him again.  Rob told me this over the phone.  I have to admit, I pretty much lost it.  I tried to talk but words couldn't get out of my mouth.  The thought of him having to go through that again on the other side of his head b/c the nurse didn't come back to start a new bag was heart breaking and incredibly frustrating.  Praise God though because the doctor said there was no reason for him to have the IV and they did not have to re-do it.

2nd night, finally got the IV out of his head

Momma is so happy about this!

We share each others joy!

We were finally home and sooooo very happy to be home!  Still amazed by his bruises I had to take pictures.

 Home from the hospital

Bruises from his multiple blood draws.
Most unsuccessful for retrieving any blood.

He had bruises on his feet also,
2 on the right, inside and out side of the ankle.
One on his left foot.  All the ankle blood draws were not successful.
The Nurses couldn't get any blood.  

Our Sweet T

Here are a few pictures from our days home from the hospital.  We had an  "ER follow up" on Friday, 2 days after being released.  We saw a doctor on base Thomas had never seen before.  I figured there weren't any appointments open for his primary care doc.  Anyway, the follow up appointment was fine. Nothing note worthy.  We had an ENT appointment scheduled for Monday.  

Feeling better and stronger!  Now, Thomas "Crockett" Black

Happy boy with an accidental bruise
from big brother.  AW felt so bad!

I don't know how a Pez dispenser can do such
a thing but it was quite a bump and bruise
for a few days.   

The last day of his breathing treatment and steroid was Saturday.  By Sunday night Thomas was coughing up a storm again and wheezing louder.  

Our visit with the ENT entailed a telescope being put down T's nose and throat.  It showed nothing new.  No inflammation anywhere.  He still has his "floppy epiglottis"  They recommended that we continue his breathing treatments though and that we talk to his pediatrician about seeing a Pulmonologist.

I thought about calling the Pediatrician right after the ENT visit but didn't since we had a "well visit" scheduled for Wednesday.  We could talk then.  

On Tuesday, Thomas' cough worsened and he became more tired and weak.  That day when we would give him his antibiotic he would throw it up.  He also spiked a temp that evening.  I was so thankful to be seeing his Doc the next day.  I wanted to talk to Him about all our concerns and thoughts on what he needs. We wondered about the steroid, as it had seemed to help his cough and after he had gotten off  the steroid his cough worsened.  We wondered about his O2 levels consistently being low in the Hosp., we wondered about the pulmonologist.

We went into the Base Clinic on Wednesday morning.  We saw the same Doctor as we had seen on Friday for his ER follow-up.  I asked where Thomas' pediatrician was and was told that He had left and this was our new pediatrician!  I'm always amazed at how our base doctors change constantly and how we are never told about it.  But that's a side note and only pertains to the story because we are now again working with someone who has not seen Thomas other than that one time and doesn't "know" him.  Wonderful.  

They started off by checking his O2 Sat, as they usually do.  Can anyone guess where he was?  yes, he was in the low 90s.  From there everything once again moved pretty quickly.  We were sent for chest x-rays, an ambulance notified, oxygen administered and before we new it, Thomas and I were loaded up in an ambulance and off we were to the Hospital, Thomas screaming b/c of all the cords on him and the face mask kept poking his eye.  I found myself saying over and over again, just like last time.  This is Thomas, this is how he sounds, this is how he breaths.  This is his cough.  Rob and the kids sent us off from the clinic, the last picture of Rob I have is of him looking at me and shaking his head.  (before he rushed over and gave me a big hug that is.... I needed that)  What were we to do?  How do we interrupt the madness and shout "HE'S OK PEOPLE!!!"  "CAN EVERYONE CALM DOWN AND LISTEN TO US FOR A MOMENT!!"

we'd be going against doctor's orders.  So, here we go again...

After rushing in the hospital and being admitted again, I looked at the nurse and asked her, "what's going to be different this time?"  She just shrugged her shoulders and said, "you'll have to talk to the doctor."  

After waiting at least 6 hours to see the doctor, he came in and told us nothing new.  He basically disagreed with Thomas' pediatrician and didn't see why she had rushed him in.  His pediatrician thought he had pneumonia, this doctor did not.  He said, "he probably has reactive airway disease."  Which I think can also be known as Reactive Airway Syndrome.  I think it is something that can lead to asthma maybe??  Anyway, the doctor also said "it would look bad if I sent you home tonight so just stay till tomorrow and I'll be back to see you, probably before noon."   I wish I could say they left our baby alone but they didn't.  They continued with more agonizing blood draws, breathing treatments through out the night, antibiotics through the needle in his head and a new steroid breathing treatment that Thomas screamed and shook through and another chest x-ray.
He was released from the hosp. late in the evening after seeing the doctor, well after noon...  His blood showed no sign of infection, his 3rd chest x-ray showed nothing new or alarming.  The doc said he has "strides" ??  on his lungs.  I don't know if that's the right word but I think it has something to do with the tissue.  Also T's O2 level still remained in the low 90's, so the Doc suggested him seeing a pulmonologist.

We went back to our pediatrician on Friday, after being released and accomplished there what we had hoped to accomplish the Wednesday we went in for his well-visit turned drama.  He was put back on a liquid steroid and antibiotic since he didn't finish his first one do to throwing it up every time we gave it to him.  She gave us a referral to see a pulmonologist down at cooks in Dallas.  She ordered a few more things too, for him to be on Oxygen and a monitor to monitor his O2 levels and 2 different types of nose drops to help "clear" his nasal passageway.  Praise God she took him of the steroid inhaler.

We got home on Friday and Thomas didn't sleep till Monday.  Seriously, no naps and up at night for a least 4 hours.  It was so awful.  The steroid had helped his cough but also being a stimulant wouldn't let the poor child sleep.  His eyes were blood shot, around his eyes were as red as tomatoes.  He was so irritable it was heartbreaking and frustrating.  I called the "nurses line" Monday morning to ask what I could do b/c we were ready to chuck the steroid to the moon.  She said to call and make an appointment, the doctor wants to follow up."  As I tried to tell her again the issue and pressed her to ask the doctor, she replied with the same answer!  So I called back to make an appointment and they wouldn't let me schedule anything before Thursday!  Could you imagine!  Praise God for my Father-in-law who doesn't mind me calling every other day for help!  I called and asked him what I should do.  He helped us and Thomas tremendously.  We skipped his steroid dose for that day and for the first time in days Thomas slept.  The next day he woke up and looked like his cheery self.  The next few days till his appointment we still gave him his steroid just half the dose the doctor had originally recommend.  that 1/2 dose helped keep his cough away and helped him sleep better.    The doctor, at his appointment yesterday, said she didn't even know that I had called on Monday.  The nurse didn't even mention it to her.  Thanks Nurse, way to do your job.

So, I think that's the drama for now.  Thanks for letting me vent and tell his and our story, at least part of it.  I chose to post these picture of sweet T and not the ones where he looks awful, sick and out of it.  I prefer to leave those behind and keep moving forward.  Thank you for your prayers and support.

To be continued....