Yet another hospital saga...Part II

Day whatever....

After receiving good results from the echocardiogram late yesterday evening we settled in for the evening, read some silly books about Muggins the Mouse and hit the hay. Monday morning started off in a hurry as daddy and Connor got here to lend support during Chloe's bone scan. Don knew I was close to having an emotional meltdown and arrived just in time to help me keep it together. They had tried for hours the day before to get an IV with no luck and the hours counting down to needing to inject the dye for the scan were quickly turning into minutes.

Finally one of the nurses that we had at our previous visit came in and was able to locate the sight and insert the IV just like that. The dye was injected and we waited the long three hours before the test started. Chloe and daddy cuddled and I got some much needed play time with my little Connor Boy. In all of this he has been a trouper. He was the center of attention until at 11 months of age his sister came into the world and has been doing her best to upstage him ever since! I am sure as night after night his daddy tucks him in somewhere in the back of his mind is where is mama???

In a side note, because of all the issues with Chloe it took awhile for us to realize that our little boy though physically and motor skills wise developed very quickly was exhibiting some signs of being special as well. Recently, he has been diagnosed with Sensory Perception Disorder and has started occupational therapy to help deal with his needs. As I run around after him in the halls of this hospital I am forced to realize that in the midst of all of her issues he has been left to struggle through his own. I can not help but wonder at times why me? Why so close together in age? How am I ever going to be able to love these two enough, work with them enough, grow with them enough to give them all that they deserve to have? Somewhere, somehow I have to dig down deep enough to find those answers and realize that at times things will be forgotten, but they will always know that they are loved.

At about 2:00 pm the peds intensivist comes in to pick up our precious little Chloe and take her for her scan. He assures us he will bring her back in an hour safe and sound. He was present when placing Chloe's g-tube and my confidence in him to deliver is high. Off to the family play room we go to spend some quality time with Connor. He had been eye balling a car to drive in there and a fish tank with Nemo swimming around in it that he needed to check out. We played, ate some lunch and Don and I found ourselves looking through a kids magazine, Highlights, in search of hidden pictures. Yes, we were bored!

I decide to go back to the room to see if she had arrived and sure enough she just got there. Still on the hospital gurney, still completely sedated. Daddy and Connor come around the corner shortly and we as a family start to wake our little one up. The nurse begins to worry as she is not coming out of the anesthesia as quickly as they figure. After a half hour or so, up bounce her eyelids and she looks at us as if what??? I was just resting. Big smile and all.

Long and short of it is that her bone scan came back normal. Now we know our little Chloe has no heart issues and no bone issues. That still doesn't give us any information on what is wrong with our peanut. One doctor suggests that maybe she just always runs a higher white blood count and platelet count. Our pediatrician disagrees in the assessment. So, yet again we sit in the hospital. Chloe sleeping nearby after a very long day. Me wishing I could finally sleep , thinking of my other kids. Especially the nine and ten year olds that are waiting for me to come home and finish the book we started reading together before their sister became ill.

Tomorrow we go back to the pediatric infectious disease doctor and now a hematologist. Again...just trying to take it one day at a time...

Yet another hospital Saga!

Do you ever say things wishing you could go back and take the words back??? Well that would be me and I wish I could go back to March 2 and not say hmmm, with Chloe having this feeding tube I haven't had to call Dr Chao, our pediatrician, in awhile...hmmm, jinxed myself there...

That very night Chloe spiked a really high fever and started with a cough. I called Dr Chao the next morning. We both agreed she was probably just dealing with a virus as she had just seen her G.I. doctor the day before and he thought everything with the button and her overall health was good. So, we decided to wait it out. Off and on, that Tuesday and Wednesday she would run a fever and then the fever would go away. She didn't have any other symptoms. Again, I called the pediatrician and again we agreed most likely a virus.

Thursday morning we woke up, her fever was up and wouldn't you know it also my pediatrician's day off. Figures! However, I do have the world's greatest pediatrician so I placed a call to her cell knowing that she wouldn't get it until she was done helping out at her children's schools, but would call me back soon. She called me back at noon and said she would meet me over at the hospital right around the corner and we could find out what was going on. After a thorough exam the doctor was convinced she had an infection brewing but couldn't pin point it. As a precautionary measure she did a blood culture and other blood work, sent us home on an antibiotic and directions to call her if she got worse over the weekend. The doctor would be at a conference, but she would be in touch if we needed to be.

Friday morning, Chloe woke up, was perkier than she had been in days so obviously the antibiotic was working. My two boys and step-daughter went to their other parents' homes and we settled in for what we thought would be a more relaxing weekend with the two older kids and Connor (our 21 month old) and little Miss Chloe. About 7:00 pm I get a call from Dr Chao and I begin to explain that it seems Chloe is doing better. She said oh good, well I got a call from the lab and they said that Chloe has bacteria growing in her blood. I said ok, what's this mean. She said, well she needs to be admitted for IV antibiotics right away. I said ok...here we go again. We get everything together and head off to the hospital. On the way, the doctor calls, and said that the radiologist report finally came in and they see pneumonia. At that point, all you can think is what's next....If I only knew how prophetic those thoughts would become...

At the end of Saturday evening the doctor that was on call for my pediatrician came in and said well we have determined that the infection in her blood is staph and there is some concern it could be MRSA. Your doctor had already wondered if this could be the case and has started you on one of the best antibiotics for this, however it hasn't been working so she wants to change it to a different, stronger antibiotic. She will be in on Monday to see you and I will continue to follow-up with you throughout the weekend.

Sunday afternoon rolls around and her partner comes and says we have confirmed its MRSA. We are going to continue with last nights antibiotic and see where it goes from here. No offense to this doctor who is very good I was not feeling as confident as I would have had my own doctor came in and dealt with Chloe. Thankfully very shortly after I make that statement in comes Dr Chao. Upon evaluation there was concern for meningitis as well as staph and we started down the path of diagnosing that issue.

During the next week we struggled with feeding situations. She wasn't tolerating her feeds. She seemed to be having seizures. Each and every day seemed to bring on a new challenge. After conducting an upper GI we determined she has severe reflux and needed to be on medication for that. The concern really became is she aspirating. So many things to look at and so many decisions to make. We decided to get her healthy and try to look at each of these new developments on an out-patient basis as the hospital we were in was not staffed to handle getting these answers. Through-out all of this she continued to look better and better and we really thought she was working toward a Sunday release day.


To make a long story short...or attempt to... after six days of iv antibiotics the pediatric infectious disease doctor as well as a local pediatric intensivist recommended taking her off of the IV antibiotics, take a new cbc to check her white count and make preparations to go home. At this point Chloe looked healthy, was acting normally, and seemed to be back up and running. The lab techs came in and pretty painlessly took the blood tests, I gave Chloe her early morning feeding and thought ah...the pediatrician has clinic this morning so she said she wouldn't be in until after noon so I can take a little snooze while my Little Princess was fast asleep. Twenty minutes into my long winter's nap I feel a nudge on my shoulder. Hey Jeri, an ER nurse will be in soon to start a new IV because Dr Chao wants her back on IV antibiotics as her white count has seriously elevated since Thursday. My heart sank...all I could think of is what's next.

All to soon the what's next came. I get a call from the pediatrician. I have just spoken to Dr Benson, the intensivist, and he believes Chloe needs to have tests to see if this infection has decided to put up residence either on Chloe's heart valves or in her bones. I knew what this meant...our hospital doesn't have the capabilites to do that so another transfer was necessary.

I call Don up at home and gave him the news. As most dad's do he got quiet and in his way tried to process that his baby girl wasn't coming home the next day. As a family, we put a plan of action in order. I would go do a few errands that morning to prepare for the possible long stay at a hospital forty minutes away and spend time with Connor our twenty one month old as well. He would spend time doing daddy duty with his little sassy girl as he calls her. The stress was enormous as I had already been in the hospital for a week so the morning didn't run nearly as smoothly as we had so carefully planned it to. All in all we managed to get the objectives done and by 2:00 pm we were being transferred. Thankfully, I was able to go with her in the ambulance once again and the same two gentlemen that transported her the first time were there again. They remembered their little red-head girl and came proudly with a pink stuffed bird that the family is still trying to put into its correct bird kingdom classification!!! It became one of her best buddies immediately!

Now we are back at St Mary's after an uneventful transfer. Last night was check-in (sounds like I am staying at a hotel) and just getting the plan of action together. This morning at about 9:00 am the techs came to take the echocardiagram. We are currently, not so patiently, awaiting the results of that test. Tomorrow afternoon is the bone scan for which she will be sedated. Right now the doctors have opted to leave her on g-tube antibiotics to see if this infection will show itself. So far no signs of fever or other issues have become apparent.

Over and over in my life I have heard from not only my mom by birth but the other woman that I have come to look at as a mom...one day at a time. That is what I am trying to do. Just one day at a time...its hard to keep at bay that the one day at a time has ran into over a week for this one little virus we thought she had. Even harder to think that the one day at a time has ran into even longer when we look back at a year of such pain but such joy as well....