We'll take the good with the bad

Hi. Ok lets start with the good.

JACKSON IS OFF OXYGEN!!!!!!!!!!!

We went to the pulmonologist's office on the 27th. We told him how well Jackson had been since the last surgery and he wanted to see how he would do off oxygen. We turned it off and waited.....waited......waited.....and kept waiting, his oxygen saturation never dropped below 98%. After about 15-20 minutes with no drop he decided Jackson could go off oxygen. He has been without oxygen since then and is doing wonderfully. He drops his saturation a little at night but not too bad. It is so much fun to kiss all over his sweet little cheeks. His cheeks are very dry and red, but I think they will heal up pretty fast. We got to take him on his first stroller ride. I am not sure what he thought but Adam and I had fun.

Ok here is the bad (turns out to be not all that bad, just a bad day)
Jackson's G-tube was held in with one stitch, the stitch came out on the evening of the 27th, we called the pediatrician's office and they said to wait until morning and call the surgeon, it would be fine through the night. So I called the surgeon on the morning of the 28th. They said because we had not been to their office yet they could not see us until October 12th but the tube should be fine. They did say if it comes out go to the E.R. SO about an hour later it fell out. We got to the E.R. at Children's Dallas at approx. 2pm. The triage nurse put a Foley catheter tube in the hole to keep it open until the doctor could put a g-tube back. When the surgeon saw the Foley he decided that if it was in the right place we would just keep that in instead of pulling it out and putting a new tube into unhealed tissue. So we went to radiology, did a barium study and found out it was in the right place. Another surgeon kept the Foley in place with a stitch and we went home. This all does not sound so bad, the bad part was that to do these things we were in the E.R. 9 hours. Once we finally got home Jackson was starving so we started to feed him only to find out the Foley tube does not fit any of our feeding syringes. I was so mad I was in tears. We had wasted the whole 9 hours. Waited all day, put Jackson through all of this, and not letting him eat only to find out we had accomplished nothing. We found a way to rig it to get through last night's feeds. I did however call the E.R. and let them know that Foley tubes do not work for feeding. The E.R. suggested we call the surgeon's office in the morning and see if they could see us and fix it in their office. So to make an already long story a little shorter. Adam and Jackson spent all day today in the surgeon's office, and Jackson is now the proud owner of a brand new Mic-Key button. One good thing that came from all of this was we really like our surgeon that we saw today, and Jackson got his button which is much easier to deal with then a tube. So see it really was not all that bad. I guess that is a long enough post for now. Thanks for keeping up with us.
A special thanks to our friend Allyson (Houston) who got to listen to me vent about this whole ordeal last night, thanks for listening.

Love,
Adam, Jackson, and Kimberly

Getting better everyday

Jackson continues to amaze me, he is such a strong little boy. He was really sore for a few days after we got home but is pretty much back to his old self. I put him on his tummy the other day to play and he started kicking his legs and moving his arms and reaching for toys. It looked like he was trying to swim on the floor. I really think he wanted to move toward the toys that were in front of him. I don't think it will be too much longer until he gets a little bit more mobile. I got him to eat about 6 bites of pears the other day. He was sitting in his favorite little chair playing when I sat down beside him and started eating. He looked at me a smacked his lips like he was copying my chewing so I jumped up got him some pears and fed him. After the first bite he opened his mouth for more. I got to eat like 5 more bites before he started screaming. I think he actually liked them. I was so excited I started crying. The weather has been beautifull here lately. It was so nice I decided we should hang out outside. We put a blanket outside and sat in the backyard and watched the puppy dogs play. I think Jackson really enjoyed it. There is not much else going on. We have a urology appointment and a pedi appointment this week. I will try to update after those. Thank you for reading.
Love
Kimberly Adam and Jackson

A week in Pictures

Hey Everyone, these are just some pics from the last week or so. I had to put one of him in the PICU in just because. Our friend Rosalind gave him a red Elmo balloon while he was in the hospital and he loved it. He still loves the chair Aunt Catherine gave him. Aunt Lori finally got to see him again. The picture where his arms are fuzzy is because he gets so excited when Adam comes in the room he waves his arms and kicks his legs and smiles so big, I actually caught him doing it. I think he is teething but other then that he is doing really good. Thank you everyone for all of the thoughts and prayers.

Love,
Kimberly Adam and Jackson

Home Again

Hi everyone. Thanks for keeping up with us. We made it home yesterday evening and things are going really well. We were not expecting to be discharged so nothing was done (the hotel was not packed up etc). We got home at about 630pm. Jackson had been fussier then usual and had not had a bowel movement since surgery, so Grandma Sheila went to the store and found baby glycerin suppositories, it worked like a champ. After just a few minutes he had a full diaper and was back to his happy self. The G-tube seems to be working well. He is not gagging anymore which is such a blessing, we really hope this keeps up. He is still a little grumpy, but he just had major abdominal surgery, so we will forgive him. I guess that is it for now. I will post some more pictures soon I promise. A special thanks to all of our Houston friends, we love you and miss you. Next time we will just come visit. Thank you for all you thoughts and prayers.
Love
Kimberly and Adam

Recovering well

Jackson appeared to look and feel much better on Monday. His swelling has really gone down and he is starting to act more like his usual self, we even got a few smiles from him today. Jackson was moved from the PICU to a private recovery room upstairs. He is back down to a 1/2 liter of oxygen via nasal cannula and is saturating at 100% pretty much all the time. Jackson's feeds were started today through the g-tube and it seems to be going very well. No more NG tube for Jackson, yeah! Jackson's left leg is a bit swollen from where they had an IV at in his femoral vein but a close eye is being kept on it. Hopefully just a few more days before we are back home in Dallas.

Love,
Adam, Kimberly, & Jackson

Back off the vent

Jackson was extubated at 4:30 Sunday afternoon and is doing well. They have him on 2 liters via nasal cannula just to let him rest as much as possible for right now and will slowly wean it back to 1/2 a liter over the next day or so. Jackson's swelling is gradually getting better. The doctors removed Jackson's epidural shortly before he was extubated and he is now just on morphine to control the pain. Jackson tried to play (pull mommy and daddy's hair, hit at the mylar balloon that Rosalind brought him) a couple of times today when he wasn't hurting too bad. They will probably start his feeds again tomorrow morning and I know this will help him feel better as he must be starving as he has not had any food since 7:30 pm on Thursday night just IV fluids. Please keep those prayers coming they do work wonders.

Love,
Adam, Kimberly, and Jackson

Third times the charm

Kimberly, Jackson, and I arrived in Houston at @1:00 am on Friday morning. We were seen in the ER very quickly. A short while later they informed us that there was not a single bed available anywhere in the hospital for Jackson so we waited overnight in the ER until his surgery at 4:00 pm Friday afternoon. Jackson went to the operating room at 4:00 pm and Dr. Olutoye came to talk to us after the surgery was over shortly before 9:00 pm and said that the surgery had gone very well. It was originally thought that the patch had come away from the esophagus area but as it turns out the two patches that make up Jackson's diaphragm had separated apart in the middle. They patches were originally left separated from each other thinking this would help provide more growing but somehow his bowels found there way in between and up into his chest again. Dr. Olutoye moved Jackson's stomach and colon back into their correct places and sewed the patches up together. The patches were still attached everywhere else that they had been sewn into the body. Dr. Olutoye said that it appears that Jackson's diaphragm is growing into the gortex, which is very good. Because Jackson still relies solely on tube feedings the decision was made to place a g-tube during the surgery so he will no longer have a feeding tube down his nose. Jackson has an epidural in place for continuous pain relief so he doesn't have to receive to many narcotics. As of right now Jackson is doing very well and the plan is to extubate him on Saturday. Thank you to everyone for your thoughts and prayers.

Love,
Adam, Kimberly, and Jackson

Kimberly & Adam get their Nervous Breakdown

Jackson has not been able to hold his oxygen saturations above 95 this week and he has also been fussier frequently enough this week that Kimberly & Adam decided that his Dallas pulmonologist should see what was going on. After x-rays this afternoon and phone conferences with Dr. Olutoye the doctors decided that Jackson has re-herniated. Jackson & his Mom & Dad are on their way to back to Houston. Dr. Olutoye will admit Jackson to Texas Childrens as soon as they get there.
I don't know how we will post from Houston to keep you advised, but we will find a computer somewhere to keep you up to date.
Grandma Sheila has the puppies & Grandma Cheryl & Grandad Bill are going to Houston.

Thank you for your continued prayers,
Love,
Grandma Cheryl

Life in the Burgess House

Hey everyone. Jackson is doing good there is really no news. He is starting to sit up better only with assistance though. He sits in his BUMBO (thanks Jackie) chair a lot and looks so cute, after he has been it for a while he starts to slump forward. He loves to pull our hair. Adam lets him pull his hair so he thinks he should get to pull everyone's hair, only it hurts really bad when he does it to me. The dogs still love him, and he loves them. I think he is going to be really smart. Adam sits him in his bouncy chair and "restrains" his hands in the lap belt part, so then he tries to get to his toys with his feet. I put a picture of him getting his toys with his toes. Work is going good and it is good to be back in a routine. We go to the cardiologist on September 6 and the urologist on September 11, I will update after those appointments. Jackson is off his Lasix, sodium and postassium, which makes our life a little easier. Well I guess that's about it for now.
Love
Kimberly Adam and Jackson