Post-Op update

Hello. Jackson is doing O.K. postoperatively. The first days have been a little rough. There have been issues keeping Jackson's pain level under control. He started out on morphine every three hours. He still appeared to be in pain so they increased the dose a couple of times. When that was still not working they started him on a morphine drip. He seemed slightly better. I have just found out this morning that they have increased the rate of that drip. His blood pressures have also been very high. This is thought to be because of the pain and lack of viagra. The viagra was being given to him through his feeding tube, because he has not been able to have anything in his stomach he went about 2 days without his viagra. Although he is not getting food yet they are giving him his viagra. When I talked to his nurse this morning she said his blood pressure was back to his normal. She also said he looks like he is more comfortable. He is also a little bit swollen but this is expected after surgery. Jackson's respiratory status is great. His blood gases have all been wonderful and he is keeping his oxygen saturation in the mid to upper 90's. They are still saying we can try to extubate again soon. Well I guess that is all for now. Thank you for reading, and all of the prayers.
Love
Adam and Kimberly

Surgery is over

They called us at about 9:30 this morning to tell us that Jackson was going up right then for surgery. He was originally scheduled as a squeeze in between the 4th and 5th case of the day so everyone was expecting it to be around 4:00 that afternoon but a spot became available earlier so they decided to go then. Dr. Olutoye performed the hernia repair and also went ahead and gave Jackson a fundoplication. Jackson did very well in surgery with no problems arising. The anesthesiologist wanted to extubate Jackson right after surgery because he was doing so good. Jackson is back in his room and doing very well. He is still on very low vent settings (22 PIP/6 PEEP, and 30% oxygen) and saturating in the mid to high 90's. Jackson should be able to get back to his pressure support trials shortly and hopefully get extubated not to long after that. We are very excited to have our favorite nurses (Allyson, Emily, Melanie, and his primary nurse Jackie) taking care of him over the next several days. Thank you everyone for your thoughts and prayers.

PS- Baby Mert is scheduled to be induced on Monday, July 3. Please pray for him and his family.

Surgery scheduled again

Aunt Catherine bought him "Little nut brown hare" from the book Guess How Much I Love You. Here is a picture of Adam reading the book to him.





Hey everyone. Jackson's CT scan today finally proved without a doubt that the gortex patch has come unsewn, causing a reherniation. We talked to Dr. Olutoye today for quite a long time. As of that conversation he was unsure of how he was going to go about fixing the hole. He said he would probably make a small incision and place a camera in that incision and look and see how big the hole is. He said if it looks small he might try to fix it laproscopically (less invasive), if it looks like a large hole he will have to reopen his abdomen. The surgery is scheduled for tomorrow (Tuesday June 27th). It is the fourth case, this means it will probably be late afternoon. The good news is Jackson is doing great. He smiled all day today it was so sweet. He even smiled at Dr. Olutoye. I will update tomorrow night with a surgery report. Please pray for us, please pray that the surgery goes well and no complications arise and that he can have a speedy and noneventfull recovery. Thank you so much for reading and all of your thoughts and prayers.
Love
Kimberly and Adam














He was all smiles today, I could not resist.

Extubated....for just a while

Friday morning, after 48+ hours of continuous pressure support trial, the doctors decided to extubate Jackson. At around 10:30 am the doctors removed Jackson from the vent. Jackson's work of breathing was not good as soon as he came off the vent. He was breathing around 80+ breaths a minute and retracting with each breath he took. His heart rate was up above 200 bpm and even with 2 liters of oxygen via nasal cannula he was really having to work to keep his oxygen saturations in the low 90's. He was given some steroids in the hope that perhaps his airway was swollen from being extubated for so long and that the steroids would decrease the swelling. It seemed to help some but even when he calmed down enough to go to sleep his work of breathing was still not good and his heart rate remained high around 190 bpm. At about 1:00 that afternoon Jackson couldn't keep his oxygen sats up so the decision was made to reintubate him. Jackson immediately felt much better back on his vent. X-rays were taken to insure that the placement of his ET tube was correct. When the results came back the doctors discovered that the gortex patch used to close the hole in Jackson's diaphragm had slipped and that his stomach was now back up in the left side of his chest. This is quite possibly the reason why Jackson failed to come off the vent. Jackson will have to have surgery to fix the patch but we don't know as of right now when he will have it. It's not an emergency as Jackson is doing just fine on his vent at 23% oxygen, a PIP of 23, and PEEP of 5 and saturating in the mid to high 90's still. Jackson is scheduled to have an CT scan on Monday to give the doctors a better idea of where the patch has slipped or come untied from. Hopefully after Jackson's patch is repaired and once he is recovered from the surgery they can get right back to pressure support trials and give him another shot at extubation. We were able to get one picture of Jackson without his tube, it's the one where he is laying on his tummy. You can see in his eyes just how uncomfortable he was. Please pray for Jackson's surgery to go well along with a speedy recovery. We'll update when the surgery is scheduled when we find out.

Moving Fast

Hey everyone. Jackson did so good on his 12 hour pressure support trial on Monday that they decided to increase the length of time by four hours on Tuesday. Jackson did 16 hours yesterday and did well. We were expecting 20 hours today so we were very surprised today when we got to the hospital and learned that the doctors were so impressed with his progress that they decided to try a 24 hour pressure support trial. This trial will be done at 9am tomorrow. At this time they will do a blood gas and decide if he can continue on pressure support. He is handling it great as of right now. If he can do it for a couple of days they will start to wean the pressure. If they are able to wean the pressure enough, they may either extubate him or place him on E.T. CPAP. The difference in pressure support and CPAP is that when Jackson initiates a breath on pressure support the ventilator pushes air into his lungs (i.e. pressure). CPAP on the other hand is just constant pressure to keep his lungs open. Doctor Speer talked to us today and said he is hopeful. Well I guess that is all for now. Jackson is making great strides and we are very excited. Please continue to pray for us, that Jackson can get off the ventilator and avoid a tracheostomy. Thanks for reading.

Love
Kimberly and Adam

Happy Father's Day

Hey this isn't really an update. He finished his 12 hours wonderfully. They did a blood gas at the end and it was AMAZING!!!!! I am really doing an update to add pictures of Jackson and his daddy on his first father's day.

Love
Kimberly and Adam

Still on the right track

Hi everyone. Jackson continues to do amazing. He is still doing the pressure support trials, he is all the way up to 12 hours today. So far today he is doing great, he has 1 hour left. Recently his heart rate has been a little higher then normal for him. They did a BNP (heart function number) today and it was 57. This is great this means that although his heart has been beating faster is not having to work harder. This basically means that the pressure support trials are not putting too much strain on his heart. Hopefully we will continue on this route and be extubated soon. All of our nurses seem optimistic. Adam and I are also getting optimistic. He is still holding down his feeds and still being fed over an hour. Well I guess that's all for now, thanks for reading.
Love
Adam and Kimberly
P.S. Although it stormed where we are, there was no flooding.

Super Smiley Baby Boy

Hi everyone. Jackson is doing AMAZING!!!!!!!!!!!!! They have gone down on his oxygen again, he is on 28%. He continues to do pressure support trials. He is up to 8 hours. He did 8 hours today with no problems. He keeps his oxygen saturation around 97-100%. He is doing amazing on his pressure support trials, the goal is to add 2 hours a day to presure support until he gets to 24 hours. After about 2-3 days on total pressure support they start to talk about extubation. He is also still holding down all feeds with little residuals. He is still getting 70mls over an hour, so the goal with this is to shorten the feed time. He is the happiest baby I have ever seen. Here are some pictures of him smiling. Please continue to pray for us and all CDH families. Baby Mert should be here soon.
Love
Adam and Kimberly

Continued progress!

In the past two days they have weaned Jackson's oxygen from 42% all the way down to 30%!!!! His PIP has been weaned from 22 to 20 and his PEEP is down to five! Jackson started pressure support trials again on Wednesday and went for a little over two hours during which he kept his oxygen saturations at 99-100. Today Jackson had a four hour pressure support trial and did great. His morning blood gases continue to be outstanding. On Wednesday they also began bolus feedings into his stomach, giving him 70 ml over an hour every three hours and so far he is doing very good with this having not thrown up and also having very little residuals, just 1-2 ml leftover. Jackson is happy and smiling all the time and making tremendous progress towards getting off his vent.

GO JACKSON GO!

Jackson's blood gas was so good this morning that instead of going down from 45% oxygen to 43% they went down to 42%! They weaned his PEEP from 7 down to 6! They even weaned his pressure support level of 15 down to 13. They weaned his ativan some more as well. They got another blood gas at 3:30 this afternoon to see how he was doing with the changes and it was still so good that they weaned the PIP (inspired pressure) from 23 down to 22. All this and Jackson still pretty much always saturates at 100%! They are saying that Jackson will probably begin pressure support trials in the next few days as well. Jackson is totally line free now as he no longer has any PICC lines or IV's. Jackson smiles all the time and is very interactive with others, which is a big deal for a baby that has been as sick as him. Enjoy the pics.
Jackson showing some attitude as he is sitting in a physical therapy chair.
GO MAVS! His friend, Robin, said that Jackson has to represent big D in H-town!

Amazing strides forward

Hi guys, this is going to be super quick, I will post more with pics tonight. Jackson is doing GREAT!!!!!!!!!!!!!!!! They are weaning is oxygen by 2 everyday. He is now on 43%!!!!!!!!!!!!!!!!!! They have also weaned his PIP (inspired pressure) from 25-23, we were on 20 before the pulmonary hypertension. He is handling all of these changes wonderfully and always sats about 100%. His BNP (heart function number) is all the way down to 50. He is happy and playfull all the time, he smiles constantly. They are checking another blood gas today, so there will probably be more changes to talk about when we get home. He is still being fed into his stomach. He is tolerating his feeds wonderfully and has only "refluxed" twice. This is amazing, no one can believe how well his tummy is doing. The feeds are still continuous, his reflux may show up when we go to bolus feeds. But right now everything is wonderfull. Thanks for reading and praying.
Love
Kimberly and Adam

THANK YOU

We would like to thank Jana Lewallen (mom to Drew 3/8/06-4/16/06 and Elizabeth). She made the amazing slide show of Jackson. We love it so much and are so happy that she was able to do that for us. She even posted it on the blog because we could not figure out how. Once again, thank you Jana.

Well We actually figured out last night that Jackson has not really been a bad boy. He actually coughed so hard is ET tube came out, and he did again last night. He has some really thick secretions and he just coughed so hard he dislodged his tube, poor baby. We got more good news today. Remember the BNP (heart function number)? It was 71 this morning, the normal range for this is 0-100. When he was his sickest with the pulmonary hypertension his was as high as 3,000. We also found out that they did a blood gas this morning and the results were "too good", HE GOT HIS OXYGEN WEANED!!!!!!!!!!!!!!!!!!!! Ok we only went from 55% to 53% but that is definitely the right direction. He kept his sats at about 100% all day. He also is not throwing up yet, so his tummy is doing great. Hopefully we will stay on this track now and have slight improvements everyday. As always please continue to pray for us, and all the CDH babies.
Love
Kimberly and Adam

P.S. Sofia is doing great, tolerating feeds and even getting to nurse, she should be on her way home soon.
Audrey is also doing wonderful and making amazing strides everyday.

A slideshow for Jackson

Bad Boy

This the outfit that Alyson gave him, don't you love
his eyes!!!!!!!!!!!!

Hello all. As you might have gathered from the title Jackson was a bad boy today. He learned a new trick. He pulled out his ET tube. In the long run it is no big deal. They simply reintubated him. They said it was a straight forward intubation and was done with one attempt. He also got a new feeding tube today. As you may remember from previous posts he was being fed into his small intestine to avoid reflux, which is common with CDH babies. They placed a new tube today from his nose into his stomach (NG tube). As of this evening he had not spit up at all!!!!!!!!!!!! This is great news, so far so good. They also check residual levels of the feed every four hours to make sure his body is processing what they are giving him. They take an empty syringe and draw out of the feeding tube to see what is left in his stomach. They want this number to be less then half the total amount of food he got over that four hour period. His residual levels this evening were very low!!!!!!!!!!!!!!! They also repeated the BNP ( heart function number) this number appears to be stable in the low 100s. Another echocardiogram was done yesterday and we got the results back today. All of the numbers that they look at with this test were in the normal range!!!!!!!!!! This is the first time this has happened since he develpoed pulmonary hypertension. They said it looks like the workload of his heart is also stabilizing. Basically all that means the Pulmonary hypertension is improving and his heart is not having to work as hard!!!!!!!!!!!!!!!!!! The goal is to now get to a point where they think the heart and lungs have stabilized, then start weaning his oxygen. They are going to do echocardiograms every other week and BNPs every week. So hopefully in a couple of weeks we will start to wean. He is also having physical therapy (PT) and occupational therapy (OT). Physical therapist are working with him on trunk and head control while the occupational therapist are working on sucking and avoiding oral aversion. The physical therapist are very impressed with his progress so far. I am going to post a picture of him sitting up assisted by a PT. The PTs are also using Kinesiotape on him to help his muscles. I am also going to post a picture of him with a giraffe, one of our favorite nurses, Emily, gave him. And another photo of him in a blue outfit that another one of our favorite nurses, Alyson gave him. Well I guess that's all for now.
Love
Adam and Kimberly

This is the giraffe Emily gave him.

He is swatting at the rings he loves this game. :)

Another infection :(

Thursday morning when we walked in to see Jackson he was being put back into bed and was not happy. Physical therapy had put him in a chair to help him work on sitting upright and he did not seem to like this at all, so they put him in his vibrating chair but he was still unhappy. Once Jackson was back in bed he began to bring his stats back up, but not up to his usual levels and his heart rate was very high for him as it was staying around 190-205 bpm for several hours. His temperature around this time was 98.8. A few hours later Jackson's temp was up to 101.8 so the doctors started antibiotics (vancomycin and gentamicin) and ordered a sepsis workup, which included blood cultures, a spinal tap, and urine analysis. His white blood cell count was 40,000 and his CRP was 3.3, which should be less than 1. The spinal tap was very clear, which is good. About 16 hours after cultures were taken bacteria began to grow in the blood culture. By Saturday morning they had identified the bacteria as a form of bacillus. With this information, the infectious disease doctors advised for the removal of Jackson's PICC line as bacillus likes to cling to stuff. Jackson had just finished his last dose of Amphotericin B the night before so the PICC line wasn't really needed as much anyways. The doctors will continue to treat the infection with vancomycin via IV. As of Saturday evening nothing else had grown bacteria, just the original blood culture. Jackson has been coughing a lot and with his increased secretions they decided to switch him to an in-line suction catheter. Jackson is starting to look and act like he feels a little better but he still feels pretty bad. Through all of this Jackson always kept his oxygen saturations up pretty good. The lowest he went was into the low 90's but he is back up to 98-100 now. His heart rate is still very fast for him as it is staying in the 130-150 range when asleep and in the 160-180 range when awake but it is slowly coming back to within normal ranges. The doctors started Jackson on Sildenafil (Viagra) Thursday evening in hopes that it would help open up the pulmonary blood vessels therefore decreasing the pulmonary hypertension even more and aid in weaning his oxygen down from 55%. With the infection though we can't really tell if has begun to help yet or not. Jackson is no longer on any morphine as they discontinued it on Friday. Once Jackson is completely done with the antibiotics they can pull the IV lines and he will be line free. That's it for now, hopefully Jackson gets over this infection very quickly.

Love,
Adam & Kimberly