Wednesday, March 31, 2010

Reality Show Bound??

I seriously think we should call TLC and have them start a reality show on our family. I am not trying to sound conceited, far from it, but we have so much drama that I seriously just want to start getting paid for it at least!!
So I had prepared myself that we had about 2 weeks before we head back to Tx. Children's and get what may be more bad news and was enjoying my time with my family, that was, until today.
For the last 2 days, Jackson has had these periods of fussiness which has just made me exhausted and then Monday, Makayla started getting sick. She started running a low grade fever which we were maintaining with meds, but then on Tues. afternoon, she started developing this rash on her face. By Wednesday morning, her face was swollen and the rash covered about 90% of her face! I immediately scheduled an appointment with the Dr. and she informed us that it was poison ivy!!!! UGH!! So we have her on some heavy duty steroids for the next 3 days and trying to keep her from itching! My poor girl!!
Apparently the poison ivy is growing from my neighbor's yard through our fence. Makayla plays back there all the time, so I don't know why she would break out now with it. Just another thing for us to deal with this week...

Saturday, March 27, 2010

And the drama continues....

Well friends, I had hoped that my next post would be great news of Jackson's road to recovery. Unfortunately that is not the case. Here is what has happened in the last couple of weeks.
After we got discharged from the NICU, we had a follow-up appointment scheduled at the Critical Care Center for a week later. So we go, and they drew blood and tested his platelet level, which was 54,000. I was a little worried since it had gone done since our hospital stay, but the Dr. said that was to be expected and he wasn't too worried about it. He also said that we would need to come in every couple of weeks for the next several months to keep checking his levels until they get back up to a normal range. Other than his numbers being low, Jackson looks great. He has been eating and growing and showing no other symptoms, which the Dr. was very encouraged by.
The Dr. was however, still worried about my levels as well. He wants me to get tested every few weeks as well until my numbers get normal as well. He thinks I probably have chronic ITP, so that's just lovely.

So this past Wednesday was our next visit and I had high hopes that Jackson's levels were going back up, only to have those hopes dashed. His levels were 15,000! I burst into tears and the poor nurse just stared at me. She quickly put us in a room and went to go get the Dr. When he got there, he quickly reassured me that even though the numbers were low, Jackson was in no immediate danger. When your platelet level gets that low, you are in danger of internal bleeding, but because Jackson is so little and not a toddler, where they can fall down a lot or bump into things, he does not pose that much of a risk. The Dr. did want him to get another IVIG treatment though, to boost his levels back up. So we had to go over to the Infusion room, where all the other kids get their chemo treatments and they started his IV.

During this visit also, Phil and I got blood drawn so we could be tested for another genetic marker called NAIT, which is a more severe version of ITP. If Jackson has this, it would be a life long thing, which he would have to take medicine for.

So while Jackson is getting his treatment, they inform us that because it is on a timed release machine, it was going to take a very long time. Since the Infusion center closes at 6:30, and he would still be getting the treatment, they would transfer us to the ER's Short Stay area and get us a room. Basically this area is for patients who stay in the ER for less than 24 hours. That was a little unsettling. Once we got over there, the nurse told us that Jackson was the youngest patient there and the youngest she's ever seen getting an IVIG treatment. We finally got done at about 8:30pm. Our appointment that morning was at 10:30, so we were at Tx. Children's for 10 hours!! We were exhausted!
Our next appointment is in 2 weeks, so at least I have a little break for now. We are still requesting your continued prayers and support as we are still not out of the woods yet. The Dr. is really hoping that he will grow out of this in the next several months, which most of the time happens. But until his numbers get normal, we are looking at many more trips to Tx. Childrens.

Thursday, March 11, 2010

First Week of Life Drama!

Ok people, I have just now gotten to a point where I can actually sit down and write this. We had some drama just a mere 3 days after Jackson was born.
Jackson was obviously born on Monday, he then had his circumcision done the following Wednesday. One of the Dr.'s in my Pediatricians office came by to look at Jackson on Thursday and mentioned to me that his circumcision looked a little bloodier than normal. He seemed very concerned, but told me to just keep an eye on it and let them know if it looked any different. Being that I had Makayla first and never seen that kind of thing with a boy, I didn't exactly know what it was supposed to look like anyway. Oh well. So we get discharged on Thursday afternoon, but before they would let me go, they said they needed a platelet count on me. So the nurse came back and said it had to be 90,000 for me to go home and that I was at 88,000. She called my OB, and she said that was an acceptable level and they let me go. (*this is important later...)

So we go home and everything was fine, but Jackson's privates were still bleeding a lot. They had told me to put a piece of gauze with Vaseline on it around the area after every diaper change. But the blood would soak through the back of the gauze. So Phil and I were concerned and called my Pediatrician on Friday afternoon. He said to come in Saturday morning and they would take a look. So we go the next morning and my Dr. was out, but one of the other Dr.'s took a look and said it looked really bad. She then sent us STRAIGHT to the Tx. Children's ER.

Of course at this point, I am a complete wreck, crying hysterically. We get to Tx. Children's and the ER docs said it did look bad, and they took some blood for some initial work up. When they came back, they said Jackson's platelet level was at 16,000 which is EXTREMELY low. (Normal is 150,000) They said we needed to be admitted immediately to the Level 3 NICU and he would definitely need a platelet transfusion to get his levels up. *This is when I remembered my issue with my low platelet count at the hospital at the time of discharge. I told the ER doc and he said that was very important and it sent up some red flags about some possible connections and what could be going on.

So we go up to the NICU, and they started the transfusion. They then took blood every few hours to check his platelet count. At the first draw, his platelet count had gone up to 83,000. So they were encouraged by that. But at the second draw, it went way back down to the 30,000 range. In a way, this was good, because it pointed toward a more definite diagnosis. So because his platelet count went back down, they then gave him an IV drug of Immunoglobulin which tells your body to stop eating up it's own platelets. At the next blood draw, his levels had gone up to 40,000 range, which indicated that it was working and his body was starting to make more platelets.

They waited until this morning to draw more blood because apparently it takes a while for your body to make more and his levels this morning were at 76,000!!! The Hematologist (blood Dr.) was VERY excited and encouraged and said he was on his way to recovery!! The condition he is now diagnosed with is called ITP- Idiopathic Thrombocytopenic Purpura. When he was in utero, my body didn't like his platelets and since we share a little blood, my antibodies started attacking his platelets. So when he came out, some of my antibodies were still in his blood and continued to attack. The immunoglobulin they gave him told his body to stop attacking. This also accounted for my low platelet count and they believe I may have chronic ITP.

So he was doing very well and they drew another blood sample Tuesday morning at 6am and the results were great! The platelets were still in the 70,000's and the Hematologist cleared us for discharge! Yeah!! We got to go home and it felt great!

But what is very scary is that I asked what would have happened if we never did see the Pediatrician and left this alone, the Hematologist said he would have started to bleed internally and by the time his blood started to come out of his nose, ears etc. it would have been too late and he would have bled out and died!!!!!! SCARY!!!

We have a follow-up appointment next week with the Hematologist to do another platelet count on Jackson and figure out what's going on with me. I was able to go get a anti-body anti-platelet test at my OB's this past Monday, so we should know the results when we go to this next appointment.

So the immediate danger is over and Jackson should not have any problems in the future, thank goodness! We thank everyone who prayed for us, we definitely felt that his fast healing was due to that!

Here are some pics from his stay in the NICU... not exactly how I pictured his first week of life.

Tuesday, March 02, 2010

Jackson Philip has arrived!!!

Well hello everyone! Thanks for being patient as we got through these 2 days of craziness!! I know you want all the details and pics, so without further ado....

Jackson Philip was born on Mar. 1, 2010
at 1:26pm
8 lbs. 12 oz. & 20.25 in.

Jackson and Mommy!

Daddy and Jackson!

Makayla was so excited to see Jackson!!

Giving baby brother a kiss!!

Holding Jackson like a Big Sister pro!!

She was just in awe of him!

Mimi and Jackson!

Grand Bubba and Jackson

Here's Aunt Jen!

And Aunt Angie!!

Jackson and Mommy are doing great! He's been eating like a pro and Mommy is slowly but surely recovering! We should be discharged on Thursday! Whohoo! Thanks for all your prayers!