May 15, 2017
Jaycee update 4/26/17
We're heading home. They didn't have to repeat the CT. Home Heath will be bringing oxygen to the house tomorrow. She will also need to go on breathing treatments.
The CT showed that her pulmonary veins leading to her lungs are small; especially the right side. We already knew they were, however they're concerned about narrowing. We have an ECO scheduled for June, that will indicate if they are or aren't.
The CT showed that she's aspirating into her lungs, and she has lung disease. Stomach acid is coming up and getting into her lungs, possibly saliva and food/drink. She's on a high dose of Prilosec to stop the acid, and a salvia swallow test and new swallow study has been ordered. Getting her to eat is completely on her time and at her pace from here on out. It may even take a few years before she'll be able to take everything orally. It is critical that we take no chances whatsoever with her lungs.
There's about 5 different things that could be causing the sleep apnea. They hope that with time she'll grow out of it. Her jaw is small, her tongue is large, and she has low muscle tone; all of which are indicative of Downs Syndrome. All of that together could be the cause. We've noticed since the last sleep study in January she has been sleeping on her side and stomach more, possibly God's way of helping her compensate. Therefore, a repeat sleep study is in the works. The other causes of sleep apnea get very complicated. As long as she stays healthy and keeps growing there is no need to run invasive tests and 'go fishing'.
May 15, 2017
Jaycee Update 4/24/17
Doctors Altaf (GI) and Baranano (ENT) were hoping to see good evidence as to the cause of Jaycee's sleep apnea and possible feeding/swallowing issues. After getting in there Baranano said even though her tonsils and adenoids are large they aren't the cause. They will eventually need to be removed but he didn't want to unnecessarily cut into her when it's not going to fix the problems at hand. Also, they prefer not to take tonsils at such a young age if they don't have to. He was able to get tubes in her ears. She may be going home with oxygen and a CPAP. Her glottis is narrow but not significant enough to cause sleep apnea.
They Did find that the upper esophageal sphincter (UES) wouldn't open when they tried to scope. When you swallow and food or something hits the sphincter it is triggered to open then close. Dr. Altif held the scope on top of the sphincter for a few minutes and it wouldn't open. He changed to a smaller scope and had to hold it a few more minutes before it finally opened. He went in and out several times after that and it opened and shut properly. The lower sphincter worked good. He stretched that area in hopes that would help with the swallowing. She's had two swallow studies; one in Tulsa and one in Claremore. Dr. Altif mentioned getting another study; this time at OU. He also mentioned possibly going back in in 3-6 months and giving her a shot of Botox in the UES to relax that muscle. Her stomach looked good, no ulcers.
Lastly, they ordered a CT to check for pulmonary issues that may be effecting her breathing. She was awake and the sedation had worn off. She did awesome the first go, but the dye didn't inject into her vein. They did it a second round but she moved a little...she was over it. We'll find out in the morning if the results are good enough. If not they'll have to sedate her (probably general anesthetic) and repeat it. The pulmonologist will visit with us tomorrow. She's hurting a little, but not bad.
November 17, 2016
We took Jaycee to the cardiologist in OKC last week and she's doing really good. All the swelling is off of her heart, therefore they took her off of lasix. Her vitals are excellent, and everything is reading normal. She looks really good as well! We are still challenged with her feedings. She's on a pump overnight and getting all her feeds through her mickey button. She will take tastes and a bite or two of food, but that's it. We are giving her the maximum volume her body can take, but she is short about 150 calories each day. She is still gaining weight because the formula she is on is readily digestible. Another-words, her digestive system doesn't have to hardly work to digest and metabolize. She's 18 lbs. 1 oz. and is 28 inches long. Many people have expressed to us that they are still thinking and praying for Jaycee. It has been a long road, and we thank so many of you for your continued thoughts and prayers; it has truly gotten us through.
Love,
The Jeffries Family
October 4, 2016
We are so happy to share that they released Jaycee. She is doing really good. It's amazing the leaps and bounds she's made in just one week. She was very weak before the operation; slept most of the day and night, couldn't hold her head up, etc. She has already gained so much strength, it's a miracle. She's a miracle!! We prayed so hard that her spirit wouldn't be broke. She is somewhat traumatized, but her spirit is still there, and coming back. She's so strong. We have follow-up appointments next week in the city. They are still wanting to keep an eye on the site incision infection, because it looks good, but not healed. She is also on sternal precautions for three more weeks. Another words, we have to handle her and position her by specific guidelines as to not disrupt her sternum. They also said it's very important that she stay healthy for the next few months as her body heals. Thank you Jesus! And thank you for all the petitions put forth on behalf of little Jaycee.
God Bless,
The Jeffries Family
September 23, 2016
Update 9/22
This morning Jaycee had a bronchoscope, they sedated her and entered below the windpipe into her bronchial tubes. She was diagnosed with laryngomalacia, an abnormality associated with Trisomy 21. Another-words, the cartilage in her windpipe collapses as she's breathes resulting in an airway obstruction. The original scope indicated minimal collapse, however once they entered they said it was worse then they thought, so they performed a supraglottoplasty to remove the excess material. She's recovering well. We are hoping this was the breathing problem and it's resolved. It's bizarre that it showed up suddenly, and the doctors don't know nor have an explanation as to why. She will remain on steroids for a little while due to the inflammation from the procedure. The tell-all will be how she reacts when she's weaned. Her left bronchial tube is smaller than the right, however they're both open good and they saw no compression from the top. We pray this got it.
Love,
The Jeffries Family
September 21, 2016
Update 9/21
Jaycee is still having trouble breathing. They feel they have enough evidence to rule out pulmonary embolism and pulmonary hypertension. The last X-ray showed that her left bronchial tube looks compressed. The next step is for ORL to sedate her and scope below the windpipe into the left bronchial. If they don't have enough evidence from the scope then they will have to sedate her again for a CT scan. She's receiving steroids to keep her airway open and help her breath easier, however while it's helping it's also hindering because steroids inhibit healing. They have also added two additional drugs to pull excess water off her heart in the case that swelling is the determinant. We have not received any news as to when these procedure(s) will take place. The cardiac team has told us they're trying to get her in as quickly as possible. Thank you for praying for our sweet baby girl to endure. She is surely a trooper!
God Bless,
The Jeffries Family
September 19, 2016
Update 9/19
They put a scope down Jaycee's throat yesterday because she's still breathing rapidly. Her airway is a little inflamed, but not significantly, her left vocal cord is still paralyzed from the first operation, but not significantly. They're going to review the film in depth and let us know what the plan is. When she's at rest she's breathing 50-60 breaths per minute, at best. When she's asleep it's about 70-80. Normal is 30. Good news is, she has improved a little overnight. They have up'd her oxygen which helps her to not labor as much. She's also getting steroids and other drugs to help keep her airway open. This has been going on since Thursday. There are several theories; they test and wait, and test and wait. No longer think it's viral related.
Lately, another miracle to share: The infection at the incision site is drying up nicely and looks really good today. I think they got it shut down!! It's not in her bloodstream!! Praise Jesus!! Thank you and God Bless!
Love,
The Jeffries Family
September 17, 2016
Jaycee does have a viral infection which is causing her to be tachypnic (breathes really fast). Her lungs sound better this morning. She had a chest X-ray this morning as well, and it looks a little foggy. They've up'd her oxygen too. She's in really good spirits this morning! Her incision infection looks the same as it did yesterday. Which is good; means it's not getting worse. It's a somewhat rare bacteria which can be resistant, so they grew the cultures in the lab and they've been testing various antibiotics to see which will be the most effective. We might know an answer this evening or In the morning. In the meantime, she's still getting hit with the "bad boy" antibiotics.
September 17, 2016
Thursday morning an infection along Jaycee's incision site popped up. They began antibiotics and sent for a culture. We got the results this morning and it is bacterial. They started some high powered antibiotics through her IV on Friday morning. We are praying the IV gets it shut down, if not they will have to open her back up. They seem to think they caught it early enough though. She also had some respiratory problems overnight. They think it's a viral infection, so they sent off some cultures, and overnight respiratory began treating her for such. She gets chest X-rays daily, and her lungs look good, however, X-ray won't pick-up if she's got something viral. That could also explain why she still needs oxygen.
September 13, 2016
Jaycee was moved from ICU to a regular room over the weekend. Overall, she's doing well for the seventh day out. Her heart rate has been high, so an Eco was ordered yesterday and we just spoke with the cardiac team today. The pericardium (outside layer of the heart) is a little inflamed, so they're treating it with medication. If the inflammation hasn't subsided by this afternoon they will medicate through an IV drip. She is a little dehydrated as well. She takes all her nutrition through her Mickey button, however she still has a suppressed appetite and can get nauseated from the meds. They're treating her for the nausea, and she's on a continuous feeding pump all-the-while modifying the ratios. It's a fine line between giving her enough fluid, but not too much as to overload her heart. She has lost some weight, but stayed steady for the last couple of days. We are still juggling various pain management techniques; trying to wean her yet keep her comfortable and not upset her stomach. It's so difficult, because she can't vomit due to the Fundoplication, and she can't tell us; we just have to watch her and her vitals closely. She's been weaned down from oxygen, but she still needs a little. She looks for the first opportunity she can get to rip the oxygen off her face, and she's gotten it done a couple of times. Her saturation levels drop immediately when she does. These are all small things on the road to recovery. It's miraculously how far she has come in just one week. Thank you for the prayers.
Love,
The Jeffries Family
September 13, 2016
Jaycee is doing much better today. She is more comfortable this morning, yesterday was bad as far as her comfort goes. It's taking a lot of drugs to keep her settled. Morphine isn't touching her, OxyContin was every 6 hours, yesterday it got changed to every 4, and she's getting tylonal between. The oxy was wearing off too soon, and we just couldn't get ahead of it yesterday. They're staying right with it today. Many IV's have been removed, the chest drain tubes, and the pacer wires. Her lungs look much better too. She's had aggressive treatments over the last 24 hours. Overall she's making big improvements!
Love,
The Jeffries Family
September 13, 2016
Jaycee hit a few hiccups last night (nothing too concerning), reminding us that she's not out of the woods just yet. Her heart rate jumped from about the 130 range to 190 twice. It took about 45 min. to bring it down. They've kept her on the cold side to prevent such occurrences. They've cooled her even more, but have not had to ice her. They've also made changes to her meds. They ran two Eco's and Burkhart is not concerned; these things happen in this 48-72 hour frame. Her lungs are still foggy. They're upping the breathing treatments today, as well as the lasiks. Thank you for keeping Jaycee on your mind, in your heart, and in your prayers
September 13, 2016
Jaycee is having some blood pressure issues. They've had to give her extra fluid to boost her pressure, as well as various medications and ratios. They also hooked-up her pacer wires to trouble shoot the issue. This morning she got a blood transfusion, and that seems to be helping; she's at a good spot right now. Once again they've had to keep her heavily sedated. However due to the blood pressure issues, it's been a fine line. Therefore, she has two nurses assigned to her around the clock. They've backed off the sedation, so one of them has to stay at her bedside constantly monitoring her so that she doesn't pull her lines out. They're trying their best to keep her comfortable. Both nurses constantly watch her numbers, converse, and adjusting meds while consulting with the doctors. She's in a very small unit designated for cardiac post-op kids. They have several doctors here around the clock for a handful of kids, they walk around and ask for updates every few minutes. Her electrolyte levels look good, and her heart is pacing at a good rate. She is starting to breath over the machine, therefore she will be extubated at some point today. Thank you for praying for our sweet baby.
God Bless,
The Jeffries Family
September 13, 2016
Jaycee's heart came back very strong after coming off the heart and lung bi-pass machine. We were told that after cooling the heart down, re-starting it takes some doing and it's usually slow going, but not Jaycee's! Burkhart and Thompson were able to repair/reconstruct everything. Her valves were constructed and a little leaking is to be expected, but not Jaycee's! We're told there's no leaking around the valves whatsoever. Praise God! We just spoke with Berkhart, and due to her size and health he was able to close her chest. He also exclaimed, with a grin on his face that everything looks perfect!! We still have a 48-72 hour time frame to get through however. This time is critical in recovering. She'll most likely remain intubated for the night. Thank you for the continued prayers.
Love,
The Jeffries Family
September 13, 2016
Jaycee's pre-op is scheduled Friday, Sept. 2. Surgery is scheduled for Tuesday morning, Sept. 6. The team is meeting Monday, 8/29 to discuss Jaycee and to plan.
September 13, 2016
Our family would like to extend to you our deepest gratitude for the love, support, and prayers you've expressed for Jaycee and our family over the past six months.
The time we've spent at home has been such a blessing, but it has been trying. We got home on April 18, and beginning around the first of May, Jaycee began slowly having difficulties tolerating her feedings. Jaycee would gag and wrench severely and multiple times a day. We worked with doctors, therapists, and feed specialist to resolve these issues. We finally had a breakthrough at the beginning of July. The gagging and wrenching is almost non-existent now and she feels so much better. She is awake more during the day and shows expression.
We take Jaycee to the cardiologist in Tulsa on August ninth. They will perform an Eco and an EKG on her. Then, we will be contacted to schedule a heart catheter to be performed in Tulsa. Afterwards, those results will be sent to OU Children's Hospital in Oklahoma City and they will contact us to schedule her next operation. We estimate the next operation to be sometime between the middle of August and the beginning of September.
Jaycee's next operation will be open heart. First, the surgeons will build a wall in the bottom chamber of her heart, dividing the bottom left ventricle from the right ventricle. Secondly, two valves will be constructed; the tricuspid and mitral valves dividing the top half of her heart from the bottom half. Next, the band, which is restricting her blood flow, will be removed from the aortic vein leading to her lungs. Lastly, a wall will be constructed where her pulmonary artery and aortic artery cross one another. This procedure is referred to as a Complete AV Canal, and is about a four hour surgery. For some days following the operation (usually 3-6 days), she will remain heavily sedated and her chest will remain open due to her size and swelling. She will be placed in a small and specialized unit where there is a cardiologist's and surgeon on staff around the clock. She will also have a highly trained nurse stationed next to her bedside at all times to constantly monitor her and her vitals.
God has worked miracles in this beautiful baby, and through her. She is a testament of God's love and grace. We feel blessed and privileged to parent such an extraordinary little life. However, it has been the love, support, and prayers from you and many others through our Lord and Savior Jesus Christ, which has sustained us.
We've been told that her aortic arch; which was reconstructed during the last operation, looks absolutely perfect. We are confident in the team of surgeons and doctors that operate and oversee Jaycee, but we know that only God can make things perfect. We are once again calling on prayer warriors for that same healing perfection, and that Jaycee's suffering is minimal.
Thank You and God Bless,
The Jeffries Family
