Saturday, July 31, 2010 2:17 PM, CDT

Well, looks like we won't be going home today. After continued episodes of gagging/vomiting we have talked to the doctors more and decided that the best thing would be to go ahead and get the surgery to have the Gtube placed in her stomach for feedings. With her gagging/vomiting now she has a greater risk of aspirating into her lungs which can cause major issues since her lungs are not in good shape already. We spoke to a surgeon today and they want her to have an upper GI done before they do the surgery to check for reflux and for any other possible problems with her upper digestive system. They plan to try and get the surgery done Mon or Tues and then she will have to stay at the hospital for a few days to be monitored and to ensure that the tube and feedings are working for her. There are risks with any surgery as well as having a tube placed but we are hoping that this will releive the gagging/vomiting spells. Nothing is for sure yet but that is the "tentative plan" for now.

Friday, July 30, 2010 4:18 PM, CDT

Elizabeth had her MRI done earlier today and did very well after sedation, they were able to do it without putting her on the ventilator. We are still discussing what to do about her steroid treatment and the possiblity of getting a Gtube for feeding but we should be able to go home tomorrow!!! We will have future trips back and forth to Vanderbilt for further treatment and if the surgery for Gtube is decided we will be coming here. Still waiting for MRI results and results from the PH probe from yesterday.

Wednesday, July 28, 2010 10:52 PM, CDT

Elizabeth had an echo on her heart Tues, the Cardiologist came back and told us that the report showed her hypertension was improving and did not appear to be as severe as the report from Cinncinati was. So that is a piece of good news for us! They do want to do a cath lab on her but it can be scheduled as an outpatient procedure in 4 to 6 months after she has some more time to grow. She continues to have problems with gagging and throwing up with her feeding tube and the doctors want to check her for reflux. So, a Gastrologist came by today and talked with us about placing a PH probe down her nose and into her throat, it will be there for 24 hrs to check for acidic content and determine if reflux is causing her to be have the gagging/vomiting episodes. If so then we may have to consider having surgery to place a Gtube in her stomach. But we wont be making a decision on that for a little while.  She has an appt tomorrow at 1 pm to have the probe put in, the poor girl will have a feeding tube in one nostril, then the PH probe in another plus oxygen on top of that!! Her MRI is scheduled for 10AM on Friday and if all goes well with it we may be looking at going home this weekend :)

Tuesday, July 27, 2010 11:20 AM, CDT

Just wanted to share the pictures we had made of Elizabeth a few weeks ago. Please click on the link below if you would like to view them.

http://soliphotography.myshowit.com/jetton

Monday, July 26, 2010 10:29 PM, CDT

Not much news today. Elizabeth is doing better with the feeding tube today no gagging/throwing up and the amount of formula she gets through is slowly being increased. The goal is for her to gain about 1 to 2 oz a day. We are still waiting for the cardiologist to come by and discuss what the plan to do if anything. We were able to wean her oxygen from 2 liters back down to 1.5 today. Still working on MRI being scheduled for Friday but nothing for sure yet.
Her mood seemed to be a bit better today than the past few days, so maybe she is feeling a little better, or at least adjusting to being back in the hospital. Hopefully we will know more about "the plan" tomorrow.

Friday, July 23, 2010 5:39 PM, EDT

An eventful day for Elizabeth. She had more blood drawn this morning and an IV put in her arm for later use. Then she went for an ultrasound on the sacreal dimple on her bottom. She had another swallow study done today, she still aspirates on thin liquids and has started aspirating on the thickened liquids that we have been giving her. The main concern with that is she does it silently, so we never know its happening. They decided to put the feeding tube back in her nose so that she wont be aspiratiing and to also help make sure she is getting enough calories to help her grow. So she is now getting feed only by the tube/pump. The pulmonologist and cardiologist came by to check on her again today. Most likely her MRI will be scheduled for early/mid week next week. We are not sure when the cardic cath will be done yet. And they still need to decide on the medication for her pulmonary hypertension.
 Elizabeth had a very busy and at times upseting day. Its very hard to watch her be stuck and poked so much and then to have a tube stuck down her nose. But we know that all of it has to be done to help make her better.
We have had so many people checking in on her and us, we are truly lucky to have such a great support system. Our familes, friends, coworkers, and even people we have never met are making this very diffucult time a little easier.

Friday, July 23, 2010 12:10 AM, EDT

We made it to Vanderbilt and after meeting with the pulmonologist Elizabeth was admitted as planned. On our way up Dr Young from Cinncinati called to check on us and reassure us that Vanderbilt was a good choice and she was confident in the care here and that she had been in contact throughout the day with the Drs here to make sure they were ready for Elizabeth. So far everyone has been great here, the Doctors seem to have a plan of action so over the next few days/weeks. The main things that are of concern are her growth/feeding issues which prevents her lungs from growing and getting better, treatment for her pulmonary hypertension which will worsen if her lungs dont grow,trying to wean her off or change her steroid treatment and her developmental delay. She will be having a cardic cath and MRI on her brain done at some point which will require she be on the ventilator again during sedation. So of course the concern for her coming off the ventilator is there. Her actual treatment will all depend on what happens with all of the tests. We dont have a specific schedule yet but I will update as we find out. The only thing that happened tonight was getting blood drawn for some tests to check her liver/kidneys and stuff to see how the steriods have affected her. Of course she didnt like that very much and they had to stick her twice to get enough blood.

Wednesday, July 21, 2010 6:44 PM, EDT

We met with Dr Lisa Young today a pulmonologist with the Rare Lung Disease program. She expressed concern about Elizabeth and her condition. After reviewing the results from the Echo yesterday Elizabeth's pulmonary hypertension has gotten worse. Which means she has more stress on her heart. Dr Young also said that almost all cases of this specific lung disease are no longer seen in children over 6 months old so Elizabeth is close to the point where the lung disease should not be affecting her. She showed us pictures of Elizabeth's lungs compared to those of a healthy child and explained to us how her lungs are very immature. Apparently her lungs are still under-developed and that is one of the problems that keeping her on oxygen along with the pulmonary hypertension. Her lungs need to grow, but with her growth issues and the sterorids she is on her growth is slowed. SO she wanted to admit her to the hospital. After discussing things and trying to decide what would be best for Elizabeth and for us, she was able to make arrangements for us to go to Vanderbilt tomorrow and be admitted so we are only 2 hrs from home instead of 6. She also discussed other concerns regarding her failure to gain weight, and her developmental delays and wants the Dr at Vanderbilt to look into those issues as well. She told us none of these issues are emergency problems but things that need to be looked at sooner than later and felt that admitting us would be the best way to get her looked at and cared for sooner than later. We are unsure how long we will be at the hospital but hopeful that Elizabeth will get some much needed treatment and not struggle daily to breath. We appreciate everyones continued support and hope that we will have better news to share soon!

Tuesday, July 20, 2010 10:22 PM, EDT

What a long day! We got to the hospital around 830 this morning and the Dr started and IV for fluids. Thankfully he was awesome and only had to stick her once!! She is usually very diffucult to get an IV in. She did well with her CT scan and echo, they did have to put her on a ventilator for CT since it was a high resolution scan. They control her breathing so they can get better pictures of how lungs and an idea of her lung capacity. They also kept her sedated for the echo so they could get some good pictures without her moving around. She was very fussy when she woke up from sedation and had trouble keeping her oxygen saturation up at first, she was a little "blueish" when we got back to see her but we were finally able to calm her and down and she got back to her base line on oxygen and we were able to leave the hospital.
 Tomorrow we meet with the Pulmonologist here that specializes in rare lung disease, I am excited and nervous to hear what she has to say. She should hopefully go over the CT scan images with us so we have a better idea of what condition Elizabeth's lungs are in.
We are hoping to head home after the appt tomorrow, and we are already scheduled to come back in October to meet with Cardiology to discuss her pulmonary hypertension.

Monday, July 19, 2010 9:09 PM, EDT

We had our first appointment today, a consult with anesthia. The Dr today just discussed with us Elizabeth's condition and made sure they knew all her meds and issues from the past. She did tell us they may have to intubate her (put her on ventilator) during the CT scan tomorrow so that they can control her breathing to get better pictures of her lungs, but we wont know if they plan to do it or not till tomorrow when we meet with radiology. Another issue that we discussed today was that Elizabeth can't have anything other than clear liquids after like 6AM, but since everything she drinks has to be thickened she cant even have clear liquids. Her CT Scan/Echo isnt scheduled until 1pm but we will be going in at 830 AM for her to get a IV for fluids since she wont be able to have anything by mouth.
I am very nervous about the sedation and now even more scared because of the ventilator and the issues she had in the past. I am hoping for the best and that the Doctors make the best decision with regards to her safety.  I will try to update throughout the day tomorrow we will pretty much be there all day.
  Thanks again to everyone for thoughts, prayers, and help!!

Saturday, July 17, 2010 8:34 PM, EDT

Headed to Cinncinanti! We are on the road right now headed towards Cinncinati Children's Hospital. We have appointments on Mon, Tues, and Wed. Monday we will meet with Anesthia to discuss Elizabeth and make sure they know all of her medical issues and discuss any concerns we have. Then Tuesday she will be put under sedation to have a high resolution CT scan on her lungs, and an echocardigram done on her heart. Wednesday we meet with Dr. Lisa Young to hopefully learn more about her lung disease and any talk more about the medications that she is on and if any changes need to be made. Please keep Elizabeth in your thoughts and prayers over the next few days! I will update this daily with any news that we get.

Tuesday, July 13, 2010 12:44 AM, EDT

I havent updated in a while, things have been "good" with Elizabeth. She is maintaining her current oxygen level at about 1.5 liters of oxygen and gaining weight very slowly. She is still small and has some developmental delay. She has started physical therapy to help her catch up and seems to be happy most of the time. We are now preparing for our trip to Cinncinati Childrens Hospital. She will be put under anesthia for a high resoultion CT scan and and echo on her heart. And we will get to meet Dr. Lisa Young, a pulmonologist who specialized in Interstital Lung Diseases in children. We are hoping to learn more about Elizabeth's disease and hopefully what we can expect in the future.  We are so grateful for the continued support and concern that everyone has given us.