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Friday, December 10, 2010

Home sweet Home

Jackson had a good night no high temps and normal breathing. In the new hospital all the rooms have windows into the room. I know it sounds weird but it has its positive side too. The windows are good for the kiddos that don't have any one staying with them. It is really sad that a child could be sick and alone in a strange place but people do it everyday. The curtains for the windows have not been installed yet and it feels a little creepy having people walking by  looking in. the nurse we had last night made Jackson a curtain. It's not fancy but it gets to job done. 
The plan for the day is to take Jackson off iv fluids and watch his temp and breathing. If it all goes well we will get to go home maybe by dinner time. I am so looking forward to decorating a Christmas tree this weekend with all my kids at home. 

Thursday, December 9, 2010

Big dreams crash

Jackson's temp started rising at about 1:00 again. It went from 99.5 (2:00pm), 99.8 (4:00) gave motrin and now it is 99.4(6:00pm). I thought if his temp stayed down through out the day we might could go home Fri afternoon. I never should have let that thought cross my mind. Jackson has spent most of the day sleeping. He watched Sesame Street from 9-10. After it was over he was tired and slept from 10-1. He was awake for respitory therapy and suction. He went back to sleep from 4-5:30. He is tired. We are just waiting on the germs to move out.

It's just a dream....

The day has started out really good. Jackson has been awake and alert. He looked good so i thought sitting up in his chair would be a good idea. I posted a pic on Facebook. He watched Sesame Street for an hour and got really tired. He went back in the bed at 10Am and is still there sleeping. The plan for the day is to continue weaning off the high flow O2 and continue to monitor his temp and breathing. His last temp was 98.6 it has been normal since 4am. He is almost back to his baseline of .5liters of O2. We are close I can feel it. It just a dream right now but I am hoping if Jackson continues on this path that maybe we can go home tomorrow.  It's a big dream...

finally turning a corner...I think

I have tried to use my blackberry to update this page but it hasn't worked. I get all my thoughts down and then someone will come in the room and i'll lay it down. When I pick it up again I've lost everything i've typed so I just gave up. Mom is here today and I  am using her laptop. Lynn is sending hers too, so I can blog. They have computers I can use but I'm not leaving Jack to update. John hasn't had to travel this week and that has been a blessing. We had a crazy time in the hospital this visit. LeBonheur opened their new facilitly this week. They are still working out the kinks. Our door to our room sticks when it is shut all the way. When you open the door it takes a great effort so which wakes Jackson. I have put a note on the door to remind everyone to leave it cracked open. The nurses are learning several new pieces of equipment and systems and ways of doing things. Bless their hearts they are running ragged. All of them have been patient and kind even though I know they have to be ready to pull their hair out. So after our scary monday afternoon we spent tues watching Jack. 

Wednesday, December 8, 2010

still ridin the virus train

Yesterday was a good day. His temps were 99.3-100 on Tyenol all day. We had one respitory event that was no where near the one we had on Mon. His resps increased because his temp increased. His temp went down and stayed down overnight.Our friend Ginny Gross from our church came and staued with jack last night while John and I went to Elizabeth and Wesley's christmas play at Jeter. While we were there Ginny called and told us they were going to have to redo his IV. The play ended shortly after the phone call so we zoomed back to LeBonheur. They put a new iv in and he cried. This makes his fifth. He has gotten wise to the nurses ways and is anticipated the pain. That is hard to bear but also I think it is a good thing to because he is anticipating.My sweet is in there! After the iv he coughed some big coughs and needwed suction. I tried rto suction but he wouldn't open his mouth. He was like NO! I tried to get him to open his mouth again and he opened slightly and vomitted all over his bed. Ginny was still with us and between her, John and I we had it all cleaned up pretty fast. Jackson had two stressful events so close together, I decided no vest treatment for the night. He slept through and so did I.I think we may have slept more than Caroline and Harrison. Stinker has a ear infection and is causing trouble too.
This morning (wed) his temp has been normal till 12:30. It was 100.4 We gave him Tylenol and just rechecked it @ 2:20. It was 98.4. He had a short morning nap that was interupted by respitory therapy visit. He needed his treatment but I still hated waking him up.

Monday, December 6, 2010

a bad afternoon

We had a good night and morning today. Things began to fall apart however, at 1:00. His Temp soared to 103.8 and he was breathing really fast 50 resp per min. The nuse called the dr.He put Jackson on High Flow oxygen and ordered tylenol/advil rotation. He also called the PICU to be on the look out for us. We freaked out! I told the dr don't be shy with Jack's treatment plan-be aggressive!So he did and Jackson is feeling better. His temp is down to 100.8 and resp are down too. Jackson is sleeping and that is a good thing. Sleep allows the body to make/repenish energy and make celluar repairs. Keep praying.

naughty pneumonia

We had a great Thanksgiving. I hope everyone else did too!

Jackson started with a little cough on thur. He went to school and had a completely normal day. Fri he was tired early in the day. I thought it was he got an early start to the day, waking @ 6am. After waking from his nap @ 4 I noticed he was hot. I took his temp and it was 102. I immediately panicked. I gave him Tylenol and a tepid bath. It came down so we decided to make the night at home. He slept through the night and woke up with 99.2. I took him to sick clinic saturday morning. Dr. Lankford heard crackles (pneumonia) so we went to the ER. They couldn't hear what Dr. Lankford heard and nothing showed up on chest xray. So we didn't know exactly what bug we were dealing with. Now we know it's pneumpnia. It has made Jack very weak. We have had three doses of antibiotics since yesterday afternoon. We are treating everything very aggresively. Please keep my sweet sweet in your prayers.

Tuesday, November 9, 2010

A very bad, no good, terrible cold!

Jackson and Elizabeth have been fighting a bad cold for several days now. I took them to the dr. yesterday and he gave them a script for antibiotics. I know the cold is a virus and it has to run it's course. The meds for Jackson are a supportive measure so hopefully the bacteria sittin' in there won't cause any problems. Elizabeth definately has a sinus infection that came with this cold. She is on meds too. Wesley started sneezing this morning. Three kids with colds and part of me says Yeah!!!!! I get to snuggle them when they don't feel good. They are getting so big they don't climb in my lap as often as they used too. The other part of me says why me?
Please lift Jackson's health up to the Lord as he battles this latest virus. Mito and virus just don't mix. I have to carefully guard Jackson's rest when he is sick. He jsut doesn't have the energy to do much more than smile at me. I know he is in there somewhere because after blowing snot out of his nose during an intense sneeze, he looks at me when he is through and smiles. It is just too sweet of a moment! Oh and last but not least WASH YOUR HANDS!!!!!! GET A FLU SHOT!!!!

Monday, November 8, 2010

An unwanted anniversary

I remember the day like it was just a second ago. I remember the words as they came out of the doctors mouth. "I think Jackson has a mitochondrial disease called Leigh's." I have played those words over and over and over in my head.
\I will never forget November 3, 2007 as long as I live. It was the day Jackson began having seizures. I had no idea it was the beginning of our mito journey. It was a Saturday and we were getting ready for a soccer game. Jackson was 7 months old. He couldn't sit up and it was very difficult to get him to smile. I didn't think anything about it because I though he was such a good baby. He never cried or fussed for anything. I thought his delays were because of being born at 35wks. I remember thinking he's ok, he'll catch up. I had no idea what was in store for us.We rushed him to the ER.  They ran some tests and we were sent home. He had another episode and we rushed back to the ER. This time more tests and we stayed all week to figure out what was wrong with Jack. I remember Monday, November 5, 2007. Dr. Morgan came to Jackson's hospital room and told me Jackson had Leigh's. I remember being devestated. I remember telling John,  I haven't even planned his first birthday party, I can not plan his funeral. So even though this kind of anniversary is not normally celebrated...I celebrate! Jackson has beat the odds of living with Leigh's. He is 3 1/2  and will turn 4 in March. I am so grateful for the people that have come into our life because of mito. I am so thankful for so many people loving my little boy. They love him so much and hate mito just as much that they put together BBQ lunch fundraisers, baseball games,and even a  5k run/walk. I am gratefuyl for people just giving to the UMDF. Life has certainly changed since November 2007.  I am grateful tonight for Jackson's life. I am thankful to God tonight for His promise that all things work together for His glory. I have no idea what will be next for Jackson and our family. I never expected to have a child with a mitochondrial disease. So, in honor of this unwanted anniversary I have began a new blog on blogspot. I think this one will be easier to log onto, load pictures and change. I hope you think so too!