Being thankful

As we just celebrated Thanksgiving, I figured I would post these to remind us what we are thankful for. I am very thankful for my healthy babies, my family and my friends. Hope everyone had a great Turkey day!






11/01/08-Cooper chilling in his bed in the IMC(Intermediate Care) a couple of days after his chest tube was placed. Notice his socks, we called these his sponge bobs to make him keep them on because usually anytime he has socks on he kicks them off and any time a doctor or nurse would try to take them off he would scream at them!

10/30/08-Cooper's admission to PICU @ University of MD. A very sick little boy.

10/28/08-A couple of hours after Cooper's admission to Baltimore Washington Medical Center. He thought it was really cool that his toe glowed.

Doctor time

We had another follow-up appointment for Cooper and AJ's 4 year well boy visit. The doctor is very happy with the amount of air that Cooper is moving through his lung, so she doesn't want to see us back for another 2-3 weeks. We will have to have labwork done next week, so crossing our fingers that it comes back good because by then he will be completely off of his antibiotics.


AJ had a good but hurtful visit. He told the doctor all about school and Cooper and anything he could think of. I was very impressed with his answers to the developmental questions that they asked him, he was extremely detailed. But unfortunately all good things must come to an end with 5 shots :( Poor thing at this age he totally knows what is coming and was not very happy with the nurse or me. Funny thing as soon as Cooper saw the nurse put the gloves on, he went running behind the door. I guess 13 days of being poked 2 and 3 times a day has him very observant of what the gloves mean.


AJ weighed in at a whopping 34 pounds and is 40 inches tall. As always the doctor gets concerned about his skinny little body and I have to remind the doctor to not judge my childs weight by the way mom looks but by the way Tony used to look! Cooper is still holding steady at 28 pounds, still trying to get him back up to his pre-hospital weight of 30 pounds.

Pictures

Here are a few pictures from our past month. We took a trip to a farm with our friends Caleb and Mrs. Heather where we got to pet animals, feed animals, milk a cow, take a hayride and pick out their pumpkins, they had a blast. Also included a couple of pictures from AJ's birthday and Halloween. I did take a couple of pictures of Cooper at the hospital with my cell phone so I will try to post them as well soon.
Cooper and AJ both go to the doctor on Wednesday, so I will update after the appointment. In the mean time enjoy the pictures.




AJ and his birthday cake that he helped bake and put the decorations on.

AJ really enjoyed all of his presents but Martian Matter was his favorite because he has been asking for it for a couple of months now. Doesn't he look like such a big boy now :(

AJ and Cooper with their "Stellascopes" that Cooper got to keep after his hospital stay. I can only imagine how much our insurance will get billed for all the "doctor stuff" we got to bring home!

AJ and all his lute after trick or treating.

AJ taking a nap with DaVinci after his Halloween at school. DaVinci is such a good sport with the boys as you will see with another picture.

AJ in his Bee costume. AJ picked out this costume a month in advance and would not change his mind no matter how many other costumes he saw. I guess he watched Bee Movie a little too much.

Cooper laying down with DaVinci.

Cooper and our friend Caleb in the pumpkin patch.

Cooper and his pick of the patch.

AJ with his pick.

Cooper trying to get into the cages with the animals, this is pretty typical of my "rotten redhead"

Such a sweet face, but don't let him fool you!

Caleb, Cooper and AJ waiting for the tracker for the hayride. As you can see from all of their faces, they were not happy about having to wait their turn.

Our picnic lunch that our dear friend Mrs. Heaver (Heather) prepared for us.

AJ was so gentle with the chick, but wouldn't look at the camera.

Cooper enjoyed holding the chick as well.

Cooper petting a sheep.

AJ and Cooper feeding the goats.

AJ petting a sheep.

AJ and Cooper running loose with the ducks and a few geese. These boys had no fears, but mom was a little scared.

AJ and Cooper play so well together and since they are about the same weight they can actually teeder totter together. (say that 5 times fast!)

Davinci and Barron.

Happy 4th Birthday AJ!!!!

Happy Birthday to you, Happy Birthday to you, Happy Birthday Booger Butt, Happy Birthday to you!!

Post Hospital Appointment

Cooper went to our pediatrician today and good news no TB!! Our pediatrician wants to see him weekly until she feels comfortable with his progression since the last time she listened to him he was only a little sick. We will also have monthly x-rays for at least 2 months to watch the progression since before we left the hospital the doctors told us it could be 6 months before his lung looked completely normal again and we have to go get blood drawn at least one more time. I used to only like our pediatrician but now I love her. She has been so wonderful during this whole ordeal, she even called us several times while we were in the hospital to check on us and translate the doctornese into english for us, so a little shout out for Dr. Wisch with the Pediatric Place! :)
One day I will figure out how to post pictures and get some up for you all to see but don't worry Bonny I won't ask Heather how to do it! lol

And the last load of laundry is done!

So it is 10pm and the last load of laundry is finally done. When I got home yesterday I went around the entire house and stripped every bed, pulled every towel and every piece of laundry I could find that might possibly have any germs what so ever on it and through it into the pile! Yes I know a little extreme, I even rewashed all my clean clothes that were left over from the hospital, I don't want to take any chances. So several hours later I am finished. In between laundry I have been de-bachelorizing the house since it has been solely occupied by Tony and AJ for 2 weeks so you can only imagine what it looked like :)
As for Cooper, he had a very good day getting more and more comfortable on his "new" legs and of course being as onry as ever. We had a hard morning, he was very whiney and clingy because now he has to share mom and toys with AJ and he was not having that at all. He is making up for his last 15 days without food because every 5 minutes he wants something out of the pantry so hopefully he will pick back up the 5 pounds that he lost. We go to our pediatrician tomorrow for our first follow up and we will see how often (if at all) she wants to see him. Before we left the hospital the ID team wanted Cooper to have a TB test done just to check him out so tomorrow we will have his TB test read.
I will update tomorrow after our appointment.

13 is our lucky number.....

So after I went back and recounted how many days AJ was in NICU it was 13 and AJ's birthday is on the 13th and now on day 13 Cooper is home!!!!!!!!!!!!!!!!!!!!!!
We met with Infectious Disease and after another sonogram everyone decided that the remainder of Cooper's pnemonia could be treated with oral antibiotics and close observation from his pediatrician. We have a very long road ahead of us still with multiple doctors appointments, blood work, x-rays, etc. but I am so happy we will be able to do that while coming back to our home.
A recap of the day: All morning Cooper was in a great mood, almost like he knew he was going home. We had our friend Tom come to visit us while his daughter was having some tests done. Tony and AJ came to pick us up around 2:30 and we were finally able to leave at 3:45. As Tony and AJ took the stuff down to the car Cooper and I waited together for our discharge instructions, we rode down the elevator together and many of the people we had met along the way and some strangers said their goodbyes to us and wished us luck with hopes to never come back :) As Tony drove away I started to cry and of course Tony and AJ had no idea why but I was so relieved to be leaving I couldn't hold it back any longer.
When we got home I was greeted by so many great presents for my family, once again we are truly blessed to have a wonderful group of friends and family who have been so supportive of these past 13 days. I can not express my Thanks enough to everyone who has prayed for this day to come.

Sunday, November 9

Well unfortunately we are still at the hospital and probably will be here for a couple of more days, but whose counting. Although Cooper has been able to go over 24 hours without a high temperature, the doctors are still concerned with his bloodwork. The Infectious Disease Team was not able to get all of the results they wanted today so we are scheduled for another sonogram tomorrow so they can compare everything in order to determine if he is ready for oral antibiotics or if he needs to stay on IV. The good/bad news is that he got a new IV put in last night because the other one went bad so he is able to walk again. It is quite sad/humerous to watch him try to walk, PT anticipated he would recover quickly but at first he would look a little wobbly and sure enough he does. It is like watching someone walking along a bumpy ship. You can tell he is ready to go home as well because we have had several temper tantrums over nothing. Lucky for me Chut and Tete came to relieve me for a couple of hours to help with my sanity.
I sure hope we get out of here soon because this is our very busy couple of weeks for birthdays: Tony, Nana, Uncle Bill, AJ, Aunt Heather and Uncle Dan. Sorry everyone all you are getting this year is this shout out!! :)

Saturday, November 8

More blood work today to check his levels because the antibiotics he is on can at some point become harmful to his kidneys. Unfortunately medicine comes with side effects and the doctors are being very proactive about checking him daily even if that means a mean poke on the arm every day. They are also checking his infection rate( CFC, CBR, I have no idea what initials they gave me:)) a normal person should be at 0.5 or below, Cooper was at 20 when we started out here! Lately he has been straddling back and forth between 3-5, so big improvements but not quite enough to send us home. They are considering having another sonogram just to check that the fluid that is left around his lungs hasn't turned into a larger infection and they will be consulting with infectious disease to check over all of his bloodwork to get another opinion.

Daddy came and brought us lunch. AJ, Brittany and Aunt Lissa came to visit tonight, what a madhouse!! As you can imagine I certainly haven't lost any weight with all the good food everyone has been bringing me! :)

Friday, November 7

We got moved to another room in the same unit and now he has 2 window seats to choose from with interesting views, the dumpsters, construction and the Helicopter pad. His spirits are good and still making slow improvements, we are looking for a Sunday release.

Chut came to visit and brought me a Wawa sub and it appears Cooper just doesn't like hospital food because he chowed down on my sub and sweet tea!

Thursday, November 6

We have moved into the "regular" pediatric unit! Once again a move in the direction of going home. Cooper went 14 hours without having a temperature :) The doctors would like for him to be temperature free but they will settle for a low grade one. He was a little grumpy today because he was woken up early to give blood so he slept most of the morning which made me a little concerned about if he wasnt feeling as well as we thought but then he sprung into action. We have a nice window seat that has a view of Baltimore and he loves sitting there watching everything. Everytime he gets up there I hear, "Wow!" He can be so dang gone cute, watching the firetrucks, trucks, AJ's buses and of course the police cars, come on we are in the city what do you expect!
Chut and Aunt Lissa came to visit tonight.

Wednesday, November 5

Cooper had his chest tube taken out very early this morning because it really hasn't had a lot of drainage over the past couple of days. Some new views of x-rays were taken on Tuesday night and the doctors are very pleased with the results. Over the past week they have seen a daily improvement of about 5% but today they saw a 20% improvement of his infected lung! They are hearing more movement of air through his right lung and he was off oxygen all night and all day with very few episodes of distress. He also went almost 12 hours without spiking a fever, what an improvement, this are the improvements we need to continue to get out of here. He was on the play mat for several hours today playing and getting into trouble. He has been trying to stand but unfortunately his IV is in his foot and we are not even thinking about changing it due to the trouble last time, so he is happy enough with crawling to get into trouble. That's my rotten redhead! So all in all another good day. Still no official word of when we are to be released but I told Cooper that he has to get out before 2 weeks because right now AJ holds that record! :)

Chut and Tete came to visit. Chut tried having a picnic dinner with him on the playmat but his appetite his still pretty poor.

Tuesday, November 4

Well we have had a great day today! I am very hesitant to say that but I am trying to be optimistic.
The surgical team has decided NOT to do another surgery, they feel his progress and the limited amount of fluid that is left next to his lung can be treated with the antibiotics and would not cut that much time off of his recovery time but more hinder it because of the surgical recooperation. But if after 4 more days of his antibiotics he doesn't continually make improvements we will consult again.
Cooper has been in a great mood all day even after a very trying night (his IV fell out so 5 pokes and 3 nurses later we got a new one in.) He had been playing, talking and just in a good mood in his crib even before the surgeons came to tell us the good news. And then drum roll please, Cooper was out of his crib sitting on a play mat!!!! PT came today to do some exercises with him and actually got him out of bed to play on the mat where he did great. I was a bit concerned yesterday because they tried to get him sitting yesterday and he just kept falling over, so progress is showing everywhere in all directions. He still has the chest tube in him and we are hoping to get that out soon because it is quite restricting but after all the playing today my guess is they will want to see if they can get anything else out. He has been taken off of the oxygen to see how he does and as I write he is at 100!!! (For those of you who don't know that is perfect!!) Although I expect to have him on it tonight while we sleep, I will take what we can get. They also have taking him off of his IV to try to get him to eat and drink on his own, so will have to hope he can tolerate the hospital food.
We have had one minor issue today, when he got out of bed for the PT we noticed a bad rash on his back has started. So the drs are consulting right now to see how to treat it and if it is related to the antibiotics or just because he has really sensitive skin and has been sweating out all these fevers for almost 2 weeks. Minor to me in the long run.
Chut and Tete came to visit today.
I am super excited about our day and hope tomorrow is better than today!

Monday, November 3

What a frustrating day! More tests but no more results about surgery. The only thing we have been told that is definative is that we will be here at least 3 more days to get a full course of antibiotics in him. Cooper shows some signs of improvement: some air is flowing through the right lung, bloodwork is looking better, x-rays are looking better and he has a bit of an attitude about being here!! All good signs but not enough to get my hopes up because he continues to spike fevers around the clock as soon as his Motrin wears off. So tomorrow they doctors and Pediatric surgery team will look at all the information and try to come up with an action plan. Chut and Tete were here to visit which always puts Cooper in a good mood.

Sunday, November 2

During the doctors visit this morning she said she could hear some air movement through Cooper's right lung but not enough to show drastic improvements so it was appearing that another more invasive surgery would be needed. She still wanted to give him the benefit of the rest of the day but she wasn't very optimistic. Although this concerns me, it is finally some real information.
Chut visited all day today, which was wonderful, I was actually able to take a 2 hour nap!! Chut and Cooper watched the Ravens game, which made Cooper very happy because he loves his football (Aunt Heather and Uncle Dan will be very proud!) Later Aunt Lissa and Aunt Ida brought me dinner, aghhh a home cooked meal!

Saturday, November 1

No big improvements, Cooper remains stable but still very sick. Today I was able to leave the hospital for a couple of hours to spend some much needed one on one time with AJ. Chut, Tete and daddy got to visit with Cooper during that time.