We're Heading Home!!

It's official...the paperwork has been signed....the oxygen has been delivered....the prescriptions have been written.....and we are going home!!!

I am so excited that we are going to all be back together again. The boys will be able to play with their sister, something they haven't done in three weeks!! But, it will come with its challenges. Rebekah is going home on oxygen, she is going home on around-the-clock breathing treatments and some new medications. It has been relatively easy here at the hospital to have an entire team of doctors, nurses, patient care technicians, and respiratory therapists all helping out with that care. At home, it will be Drew and I doing the work of that entire team. It will be busy, but at least we will be busy in our own home all together!

Please pray for safe travel for Drew as he comes to get us and then as we get home. The major roads have pretty much been cleared, but the secondary roads are still very icy from what I've heard. We will also have to stop at the pharmacy to get Rebekah's new medications.

Hope you are all having a great day! If it is a little while before you hear from us again, just know that we are at home enjoying being back together again!

Nancy

Where's the snow??

I'm sitting at our hospital window looking out over a dusting of snow on the rooftops below me. So much for the 3-5 inches that were predicted! The ice, however, is definitely coating all of the treetops that are within my limited view. A couple of the doctors didn't feel that they could make it in this morning, but for the most part, it's business as usual here at the hospital. Minus the visitors, anyway. The lack of people downstairs when I went to get my breakfast was conspicuous! I had never really thought about how busy and bustling the downstairs lobby and atrium area is until it was abruptly silent. Wow. What a difference!

Miss Rebekah is blissfully unaware that she is missing her first snowstorm, however small it is. She slept through the night peacefully except for having to go up to 1/2 liter of oxygen again. Her oxygen sats were just not holding steady. I have to be honest, her sats are fairly low this morning, as well, especially for being on 1/2 liter. She is only at 81-82 right now, but her lungs sound clear, so I'm trying not to get too concerned about it. Surely we couldn't be going into another cold or respiratory illness when we aren't quite over this one, right? Right?

As for the testing on Rebekah's heart, she was finally attached to a Holter monitor last night around 9:30. She was supposed to have been on it by 5:00, but I guess someone in the EKG department had called in sick and they were really backed up. This monitor records all of Rebekah's heart rhythms for a 24 hour period for the doctors to review. The main reason for doing this is to determine if Rebekah's elevated heart rate (and corresponding fussiness) is caused by the medications she is taking (two of them can elevate the heart rate) or if she is having some abnormal heart rhythms. Once the doctors have determined what is going on, they will be able to make changes or adjustments to our medications as necessary. If her heart is having abnormal rhythms, Rebekah will most likely be given a beta blocker (medication) to stop the abnormal rhythm from occurring. The cardiologist and I don't really think that is the case, but they want to rule out any possibilities. As far as Rebekah is concerned, the Holter monitor just gives her another set of wires and leads to chew on! :)

So, that's about all from our arctic winter world. We're here until further notice. I think we're going to take advantage of the TV while we're here and find some figure skating to watch. Did I tell you that Rebekah likes to watch figure skating? Or, maybe I like to watch figure skating with Rebekah! :) Either way, it's a nice way to pass the time. Just as long as we're not still here to watch the Olympic figure skating. Yikes!!

Nancy

Decisions

Rebekah has not really had any major changes in the last 24 hours. We go up on oxygen a little and back down a little, but we have not been able to completely come off the oxygen. The breathing treatments seem to maybe be helping a little, but there are times when Rebekah gets quite congested again and struggles to breathe. The g-tube had a major leak this morning, enough to soak Rebekah's shirt all the way around, so we're not sure why that happened, just watching to see if it happens again.

Our decision is this: do we stay in the hospital, or try to go home and manage Rebekah's care at home? If you have seen the news at all today, you are aware that a major snow and ice storm is hitting the southeast today and tomorrow. Here in Greenville, we are forecast to get more than 3 inches of snow followed by sleet and freezing rain. If we do go home, it might be a problem to get back to the hospital should we need to. If we stay at the hospital, I will not be able to see the boys until sometime next week, possibly next Sunday if we are here that long. Dr. Darby is willing to go either way and is leaving the decision up to Drew and I. Dr. Lucas, our cardiologist, is also supposed to be by this afternoon to weigh in on his opinion. I highly value his perspective and am anxious to see what he thinks.

The decision all hinges on the home oxygen being set up today, and that might break the decision altogether. If we can't get the oxygen at home today, then we are staying here. Period. If we are able to get the home oxygen, we will go home with oxygen, a heart/oxygen monitor and around-the-clock breathing treatments in addition to the regular schedule of continuous night feedings and medications.

We want what is best for our whole family, including Rebekah, and sometimes the answer isn't wrapped up with a neat little bow! Please pray that Drew and I and all the doctors involved in Rebekah's care will make the best decision, and that we will have peace about what that decision is. The boys are missing me and haven't seen their sister in three weeks. Right now I feel very torn about where I need to be. We would appreciate your prayers!

Update: Thank you all for your prayers. The decision was ultimately taken out of our hands. The cardiology team decided that we are where we need to be right now, so we are not leaving the hospital. Because of Rebekah's elevated heart rate the last two nights, our cardiologist wanted some tests run overnight and into tomorrow. So, the earliest possible discharge would be late tomorrow or early Sunday. So for now, we're watching snow flurries from our hospital window!

Nancy

A Quick Update

Just wanted to let you all know that Rebekah has been doing better today. Last night there was talk of sending her back to the PICU if her breathing and heart rate had not stabilized, but thankfully once she fell asleep, her body relaxed and calmed down.

We have pretty much remained status quo today with the notable exception of being highly sensitive and irritable from the steroids. We should be able to stop the oral steroid on Saturday.

I'm going back to holding my Bekah-boo and will update if anything else changes!

Nancy

Scratch That!

After bragging this afternoon that Rebekah was making a turn-around and seemed to be doing better, tonight we had a u-turn of a different kind. Between 5:30 and 6:00, Rebekah was getting increasingly more agitated and restless, no matter what we tried to calm her down. She finally fell into a restless sleep for a bit only to be awakened by the Respiratory Therapist.

The RT gave Rebekah her nebulizer treatment and chest PT at a few minutes after 6:00, and Rebekah has continued to have a tight, wheezing cough since then. Her heart rate has also been quite high - above 180 for most of the time, only occasionally dropping to the 160's (normal for her is below 150's). She is now back up to 0.5 liters of oxygen just to keep her oxygen saturations in the low 80's. The RT that came in around 9:30 believes that her lungs have more "junk" in them than he heard in previous nights.

Right now, Rebekah has fallen asleep and her sats have come up to the mid 80's on 0.5 liters. We are waiting on the resident to come in and decide if we need a chest x-ray tonight or if it can wait until morning. I will try to update again when I have more information.

Update: The resident that saw Rebekah tonight believes that her elevated heart rate was caused by the effort it was taking for her to breathe. He wants to watch her a little longer and then increase the amount of oxygen she is getting if necessary. Other than that, he does not feel that we need to do anything tonight, unless Rebekah's breathing or heart rate get worse. When we see Rebekah's regular doctor tomorrow, we can decide if there is anything else we should be doing.

Thanks for praying for Rebekah!

Nancy

Turning Around

Sorry, I don't have any more cute pictures today. It's hard to get cute, creative pictures when you are in the same place for two weeks!

Rebekah's oxygen was turned down to 0.2 liters for a while today, but turned back up to 0.25 this afternoon. When Rebekah is just resting or still, she does well, but as soon as she gets excited or active for a period of time, she seems to need more oxygen support. She was starting to breathe more rapidly and her breathing was a bit more labored, so we gave her a little more help in that department.

Although Rebekah has been coughing some today, it is noticeably less frequent than yesterday. It is still a "tight" cough that sounds like she's struggling to breathe during her coughing spells, but it's not the forceful, not breathing during the episode coughing that she was having yesterday. Dr. Darby is adding a new medication called Pulmicort to our nebulizer treatments today. It is going to be a long-term (probably 2-3 months) medication to help keep Rebekah's airways open. It should make Rebekah's colds a bit more manageable from home and not result in as many hospital trips - we hope!

Dr. Darby is also considering referring Rebekah to the pediatric pulmonologist here in Greenville. It is something that we have discussed with Dr. DeMoss (Rebekah's pediatrician) before but in the end we decided that her oxygen levels were caused by her cardiac function, not lung function. However, because Rebekah has had two fairly major respiratory illnesses in the last four weeks, Dr. Darby feels that she may be better monitored by a pulmonologist. We should know tomorrow what Dr. Darby's decision will be.

Yesterday Dr. Rauniker (cardiology) told us that he had spoken with the scheduling department at MUSC and had been given a tentative date of February 23 for Rebekah's heart catheterization. I say tentative for two reasons. First, we are concerned about Rebekah coming down with yet another respiratory illness in the next four weeks, similar to the scenario we have right now. Obviously, that would postpone the heart cath again. Second, that week and the week following would be the worst two possible weeks as far as Drew's work schedule. We are willing to do a lot of rearranging and rescheduling to accommodate Rebekah's appointments, but there are things happening those two weeks that just cannot be rescheduled. So, we are discussing either moving the heart cath one week earlier than it is currently scheduled, or two weeks later. We will be seeing Dr. Lucas for a routine visit on February 3 (providing we are not still in the hospital!!) and will discuss the date with him. I'm fine either way as long as we can keep Rebekah free from respiratory illness between now and then!

One of the medications Rebekah is on right now is Orapred, an oral steroid to help open up her airways. It is doing a great job of that, but has the miserable side effect of making Rebekah hyper to the point of jittery. At 5:30 in the morning, this is a very miserable side effect! Rebekah has been having a harder time falling asleep and staying asleep since she started the Orapred. We are hoping to see enough improvement in the next couple of days to take Rebekah off of this medication, but please pray for calmness in the meantime!

I'm off to get some supper before Rebekah wakes up. Thank you for all of your continued prayers and encouragement!

Nancy

Craziness!

It has been a busy couple of days in Room 6518; so busy that I really haven't had a chance to blog! Rebekah has gone up and down in her oxygen requirements, but is currently down from 2 liters to 0.5 liters today. That's part of the good news. The other good news is that the CBC and CRP were within normal ranges, and the mycoplasma, RSV and flu tests all came back negative.

My teddy, my dolly, my tubes, my cords and me!

As far as the g-tube goes, feeding with it has been great! We have not seen any of the swelling and pain that Rebekah had initially when she was admitted two weeks ago. The bad news is that for some reason the site around the tube started leaking today. We're not sure what caused it or why it's happening. The surgeon is supposed to be back this afternoon or in the morning to take a look at it again. We just can't seem to stay away from Dr. Abrams! :)

This morning, we had a great student nurse from USC - Greenville (sorry all you Clemson fans!). He and his wife have four girls almost the same ages as our four boys, so we spent some time swapping kid stories. We have really enjoyed meeting all of the student nurses that we've had in the last two weeks.

Mommy says I'm really cute!

Now for the lungs.....After reaching an all-time high of 2 liters of oxygen yesterday, Rebekah's nurse was able to reduce the amount of oxygen overnight to 0.5 liters. This is due in large part, I think, to the addition of Orapred (an oral steroid used to open constricted airways). Within a few hours of Rebekah's first Orapred dose we saw her oxygen sats climb into the upper 80's and even 90 for a while. In addition to the Orapred, Rebekah is now getting chest PT (where they tap on her chest with a little rubber cup) every 8 hours and nebulizer treatments with Xopenex every 4 hours. We are trying to maximize the effectiveness of the Xopenex in Rebekah's system and not go too long between treatments, because 4-5 hours after a treatment is when she seems to need more oxygen.

Rebekah's lungs have sounded much worse today than they ever have. The respiratory therapist today let me borrow his stethoscope, and I could very easily distinguish the wheezing in Rebekah's lungs. It would have been incredibly hard not to hear it! She has had a very tight, painful-sounding cough today and has been somewhat irritable this afternoon. Dr. Darby reviewed the chest x-ray from yesterday, and it, too was a little worse, particularly in the right lung. There was some streaking of the right lung, which can (but not always!) indicate early pneumonia. The atelectasis (collapse of the lung) in her lower left lung was still there, but no worse than it was on Saturday. If you remember, the right lung is the one that does not technically function, so we are working hard to keep it from getting worse.

For tonight, we are going to continue the medications and breathing treatments and try to keep Rebekah comfortable. Most colds and viruses peak between days 4-6, and tomorrow will be day 6. So we are hoping that by Thursday we start to see some improvement. For now, I will hold and snuggle my baby a little more and enjoy the time I'm getting to spend with her.

Update: Since finishing this post, the surgeon and his entourage came by to check Rebekah's g-tube. His opinion is that all of the forceful coughing Rebekah has done today has just forced some discharge to leak around her tube site. So, it doesn't look like this should be anything to worry about unless it gets much worse or continues after she is over her cold. Good news!

Nancy

A Tribute to a Fighter

It is with a very heavy heart that I share with you: Josiah Nathaniel Wilson was freed from his earthly body this afternoon around 1:30. Josiah means "Jehovah has healed," and that is certainly true now more than ever. Josiah will never know pain or suffering again.

Josiah, you were a miracle baby and brought your family much joy. You hung on and defied the odds so many times. You are loved and will be greatly missed.

Please be in prayer for Milo and Erin and their girls, Daylia and Hazyl. Pray that God will give comfort and peace in the coming days and months.

Drew and Nancy

Hold the train!

The verdict is in and we are not going to Charleston this week. After two days of discussion between our Greenville cardiologists, our pediatricians, and the cardiology group in Charleston, it has been decided that we need to wait and let Rebekah's lungs get back to normal before attempting the heart catheterization. We will know more this week, but the current plan is to try to reschedule in about two weeks.

So sweet!

Rebekah has had a busy two days! Yesterday, she woke me up around 5:00 in the morning with her oxygen sat monitor beeping. She had dropped into the mid 70's and was not able to come back up on her own. So her nurse gradually increased her O2 until Rebekah was at a full liter of oxygen. Then Rebekah had another incident early in the afternoon yesterday when her sats went down again, so we are currently on a liter and a half of oxygen just to maintain sats in the low to mid 80's. Our night nurse was going to try to wean Rebekah down some during the night, but her sats were never stable enough and high enough to wean. That left us with a big question - what is going on to make Rebekah's sats so low and unstable??

I love you!

This morning, Dr. Butler came by (Zac and Justin both had his wife as their K-4 teacher.). He looked at the chest x-rays that Rebekah had done yesterday and said that the lower part of Rebekah's left lung has collapsed most likely due to whatever respiratory bug she has right now. If she is not expanding her lungs fully, they are more likely to collapse. Thankfully, her right lung looks fine. We also ruled out RSV yesterday, so that is encouraging! Dr. Butler ordered some chest PT for Rebekah (remember how much she liked that last time she was in the hospital?) and some nebulizer treatments with Xopenex every 6 hours. Xopenex is a fairly new drug that is supposed to have the result of opening the airways just as well as Albuterol, but is not supposed to elevate the heart rate and blood pressure quite as much as Albuterol does. We'll see how Rebekah does with it.

I like to smile!

Rebekah also had an echocardiogram this morning, just to rule out any possible heart complications. Dr. Raunniker came by to see us this morning, and he was going to read the echo and let us know if there were any problems. We aren't expecting any. This looks like the work of a respiratory illness, not a cardiac problem.

So, that leaves us in the hospital a few more days until we can get Rebekah's lungs back to normal. We have officially been in the hospital for half of 2010 now, and are looking forward to being able to go home. We are so thankful that Rebekah made it without having to be hospitalized until almost Christmas and then again in January. Many other kids and parents are not able to say that. If you think of it, please keep our little friend, Josiah, in your prayers. He had been home for a few days after Christmas, but had to be taken back to MUSC with unexplained high fevers. Now the doctors believe he has an ulcer in his stomach and have put him on some new medications. I'm sure their family would appreciate your prayers.

Congratulations!

We have won an all-expense paid (!!) trip to our local hospital...room 6518 to be exact....indefinitely! Okay, maybe not indefinitely, but certainly at least until tomorrow. I'm going to quit speculating on when we may get to go home because something seems to happen every time to prove me wrong!

Scenes from 6518...what we look at every day!

So last night we were all ready to get our walking papers today and hit the road when Rebekah decided to desat around 76 for about 10 minutes. We turned her oxygen up gradually from .25 liters to 1 liter before her sats came back up to the low 80's. Dr. Seth and Dr. Roach (who is an awesome fly-killer, by the way!) came in and we speculated that maybe Rebekah had gotten too much fluid and wasn't able to clear it all out, thus making her heart and lungs work harder. So, we turned off Rebekah's IV drip and gave her Lasix and waited to see what happened. About an hour after doing that I went to bed and Rebekah's nurse gradually weaned her oxygen back down to .25 liters during the night. Right now Rebekah is at .20 liters and her oxygen sats are hovering around 81. That's not ideal, but it's not below our magic number '80' either.

Feeding her bottle to her baby doll. :)

As of this afternoon, Rebekah has had off and on fussy spells. Her sats are fluctuating from about 76 to around 85 and her breathing is more rapid than usual. She is also sneezing and coughing a bit and sounds a little stuffy. All of that earned us at least one more night's stay for observation, and we'll see how she is doing tomorrow.

Rebekah was in a good mood last night!

As for Charleston next week, it's all up in the air. Today I spoke with the lady who handles admissions for the cath lab, and she was very hesitant to let me know anything one way or the other. I will need to call her on Monday and let her know how Rebekah is doing. She will then talk with Dr. Baker (the cath lab surgeon) and he will let us know if we can come or not.

This entire student nursing group from Clemson all came to Rebekah's room to listen to her heart. Truncus is not something most of them will ever come across in their patients, so they all wanted to see Rebekah and her cute little leggings! :) Rebekah loved playing with them.

Dr. Darby has been by to see Rebekah this afternoon, and his "gut" feeling is that Rebekah is coming down with some kind of respiratory illness. There are no specific signs that make it a definite diagnosis, but both Dr. Darby and Rebekah's nurse (who has been with us for three days) have the same opinion. Currently, we just bumped Rebekah back up to .50 liters of oxygen because she was not able to keep her sats above 80. Her breathing has become a little more uneven, and I can hear her breathing from about four feet away. Even with those little things, Rebekah is still in a good mood and laughing and playing.

I love this look! "Hmmm...what are you up to now?"

We are probably going to see someone from Cardiology this afternoon. Dr. Darby said he would be recommending that they come by to listen to Rebekah and give their opinion on the cath lab next week. Dr. Lucas is not on call this month, so we may see Dr. Ronniker, who is just as nice and knowledgeable as Dr. Lucas. So many new friends for Rebekah to play with! :)

I like to stick my tongue out!

That's about it for now. We just continue to hang out and try to get our little girl well enough to go home. I'm so thankful that she has such a sweet disposition even when she's not feeling the greatest.

Nancy

We're Done!

Rebekah did a great job during her procedure today! We went with her to the OR around 10:00 and had to just a few minutes for the OR to be available. The nurses and anesthetists wheeled Rebekah's crib into the OR, and Drew and I came back upstairs to her room to wait. We were probably in her room about 30 minutes and Dr. Abrams called to say he was all done!

The night before surgery.

Dr. Abrams was pleased with how well everything went. He did use the MINI One g-tube that had been ordered for Rebekah. It fit perfectly, but he was a little concerned about watching to make sure it doesn't get too tight as she grows. Dr. Saad (the surgeon we had seen in the office two weeks ago) did mention the same thing, but his plan was to order the next larger size as our "spare" and then we would have it on hand when we needed to change it. The MINI is a 16 FR (16 French, which is the diameter of the tube itself. The Mic-key was a 14 FR and was too small in her opening.) and it is 1.2 cm (The Mic-key was 1.5 cm.). As you can see, there was a big difference in size from the one Rebekah had been using to the new one. We hope that makes a big difference in how well it fits and works!

Less than thirty minutes before surgery. Rebekah was hungry and sucking on a pacifier - something she almost never does!

The anesthesiologist had no trouble inserting the tube for the ventilator, and Rebekah did so well that they removed the tube and vent before we ever saw her in recovery. When we came downstairs to meet her in recovery, she was sitting in a rocking share with a very sweet nurse's assistant. Rebekah was so comfortable and relaxed that we just let her stay there while we waited the required 30 minutes before we could bring her back up to the room.

In recovery, post-op

Rebekah was a little fussy when we got back to her room, mostly from having woken up during the ride back, I think. We were able to give her Tylenol and her noon meds and then she calmed down and drank about two and a half ounces of breast milk. She was awake for a little while and has been sleeping ever since. The plan for the afternoon is to let her sleep and eat when she wants and then to use the g-tube for her overnight feeds. If all goes well, we could be looking at leaving tomorrow!

Thank you everyone for keeping Rebekah in your thoughts and prayers today. The procedure could not possibly have gone better. We are praising God for guiding the doctors and anesthetists during the procedure and for the good outcome.

Nancy

Someone's Hungry!

Rebekah has been NPO (no food or drinks) since midnight, and she is a hungry girl! So far, she has been dozing and sucking on her fingers, and I'm hoping they come get her before she is really awake and mad!

Drew and I will be heading down to surgery with Rebekah and waiting with her until they take her into the OR. Then we will come back up to her room to wait for the nurses to call us back to the recovery room. Depending on how quickly Rebekah wakes up from the anesthesia and how soon she is able to come off the ventilator, she may move back to a bed in PICU before coming back to her regular room.

Thank you for all of your prayers, emails and comments, both here on the blog and on facebook. We appreciate all of the support and encouragement!

Nancy

Hello from here!

Tomorrow morning Rebekah's g-tube should be fixed!!! We are super excited! Rebekah is scheduled to go to the OR at 10:00 tomorrow morning for a g-tube reinsertion. Because this is a very minor procedure, our cardiologist cleared us to stay in Greenville instead of having to travel to Charleston. Rebekah will be taken back to OR and given an anesthetic and placed on the ventilator for the procedure. A scope will be sent down her throat into her stomach to verify that the new tube is inserted properly and is in the correct place.

The new g-tube MINI that was ordered for Rebekah two weeks ago arrived at our house today, so the surgeons will be trying that tube first. It is another balloon style g-tube but made by a different manufacturer. The balloon is shaped a bit differently and the size of the tube is different so hopefully it will fit correctly. The top part that you see is the part that will be above Rebekah's stomach. The balloon will be in her stomach and hopefully not block her intestinal tract!

After the procedure, Rebekah will be taken to the surgical recovery room to wake up and hopefully have the ventilator removed. Afterward if all goes well, Rebekah will come back to her room on the floor. If she is having a hard time waking up or coming off the ventilator, she will go to the PICU first until she is more stable.

We are not expecting any problems tomorrow. Dr. Abrams is not new to our family. For those of you who have known us for a while, you may remember that he is the surgeon who operated on Aaron after he was born and we learned of his imperforate anus. We are confident that Rebekah will be in good hands with Dr. Abrams.

If all goes as planned, we are hopefully going to be discharged late Friday or early Saturday morning. We will have the weekend at home and then leave for Charleston on Monday afternoon. From one hospital to another!

Please pray for Rebekah tomorrow. Pray for the doctors and anesthesiologists who will be working with Rebekah. And most of all, pray that this will resolve Rebekah's g-tube and feeding issues so that we can get home!

Nancy

What to do in the hospital....

Life in the hospital can get kind of boring if you just sit around and do nothing. So, I'm going to tell you what I've learned to liven things up a bit.

First, you should invent new ways to do old things. For example, using your feet to hold a bottle. It works really well! You should try it sometime!

Next, after the bottle is done, you should play with your toys. All of them. And all of the cords and tubes you can get your hands on. Spread it all out, all over your bed. And then promptly fall asleep. Right in the middle of your fun.

Lastly, you should awaken from your nap to find your daddy. And proceed with lots of hugs and cuddles and blow lots of bubbles. Cause all little girls should have cuddles and snuggles with their daddies. Especially little girls in the hospital. It just makes life better.

And that is what you should do in the hospital.

Rebekah

A Plan!

Drew and I after the banquet we went to Saturday night. After we ran through the rain to get back into the hospital!

Several of you have asked about the banquet that Drew and I attended. We enjoyed the time we were able to get out on Saturday night. We went to the Greenville Home Builder's Association 50th Anniversary celebration. It was very relaxing and nice to visit with other adults! We were surprised and excited when the builder Drew works for was named the 2009 Builder of the Year in the Greenville/Upstate, SC area. Congratulations, Todd! You can check them out at Addison Homes!

Grammy and Rebekah

So let me recap yesterday and then I'll move on to today's plans. Yesterday was kind of just a waiting game and was much less dramatic than Sunday!! GI was waiting for the surgeons to come back to check Rebekah's g-tube. The pediatrician was waiting for the surgeons to come back to check Rebekah's g-tube. The residents were waiting for the surgeons to come back to check Rebekah's g-tube. I was waiting for the surgeons to come back to check Rebekah's g-tube. See a pattern here? :)

Early yesterday afternoon, Rebekah's IV blew. (You know, the one we spent four hours getting in and finally had to put into her head?? Yeah, that one.) It took two nurses and myself about half an hour to unglue all the tape used in an attempt to hold that IV down on top of Rebekah's hair. It's a wonder that she isn't bald now! In the middle of that process, Rebekah decided to desat, so she went back on oxygen. We finally got all the tape off and decided to let Rebekah rest for an hour or so before attempting to place another IV (Her heartrate had been in the low 200's and O2 sats in the 60's during that whole episode). While Rebekah was resting, her nurse called and (successfully) begged the doctor to not order a new IV, as long as we could get Rebekah's full feeds in overnight. We were determined to get those feeds in even if we had to pump them in with a syringe! :) Okay, not quite that bad, but we were close to desperate.

Monday afternoon Rebekah had another x-ray done to check the position of the NG tube to see if it was still in position or if it was twisted or kinked. Through Sunday night, the feeding pump kept alarming that the line was occluded (blocked). The x-ray showed that the NG tube was about 2cm short of where it needed to be - it was just barely into the tip of the stomach and they like it to be at least a couple of centimeters in. The alarming pump was determined to be faulty as well, but we still needed to readjust the position of the tube. Rebekah was not at all happy about that fact and started to turn blue on us just to prove her point. We turned her oxygen up a little more and she was fine. So, she is now on 1/2 liter of O2 and will hopefully start weaning off a little tonight and tomorrow.

After all the waiting, Dr. Abrams (one of the pediatric surgeons) finally came late this morning. After a week of insisting that something is wrong with the g-tube, Dr. Abrams said he thinks the tube is "in the tract". Basically, when the tube is inflated (or not) it is sitting in the opening of Rebekah's intestinal tract called the pyloric. That's the problem. The solution? Replacing the tube with a different size and/or style of tube.

This is what to do when life gets too hard!

The solution, however, is not as cut-and-dried as I had hoped. Dr. Abrams feels that it is necessary to place Rebekah's new tube visually, which means that they will run a scope down her throat into her stomach to make sure the tube is inserted correctly and is in the correct place and is not blocking the pyloric. In order to do the scope, Rebekah will have to be under anesthesia and on the ventilator. UGH! That was certainly not the answer I wanted to hear!

The next step, now, is to wait for our cardiologist to come by for a consult. As we have mentioned on the blog before, anesthesia for a heart baby is very tricky. There can be complications far beyond the normal complications for a "normal" baby. Greenville Memorial is not equipped for pediatric heart patients, so therefore, there is not a pediatric cardiology anesthesiologist here. The question now becomes: do we do the procedure here, or is it risky enough to move to MUSC in Charleston? That's the answer we are hoping to get from our cardiologist. If we need to go to Charleston, arrangements will have to be made and hopefully we can have the g-tube placement and the already scheduled heart cath (Jan. 26th) during the same trip. Unless the cardiologist thinks differently, we would be discharged from Greenville Memorial and then drive to MUSC whenever they schedule us to be there. At this point, hopefully that would be sooner than later! While this is certainly no emergency procedure, it is equally not an elective procedure. It is best described as a "priority" case because if the current non-functioning g-tube were to come out, it would immediately become an emergency situation. Oh, I forgot to say that the balloon on the g-tube currently in her stomach burst yesterday, so the tube is now taped in so we don't lose the opening. Fun, fun!

Always such a sweetie!

So, as frustrating as this is, at least I feel like we have a plan and are working towards getting this all fixed so we can get back home. Rebekah is tolerating all of this with the sweet spirit that she always has. I have never seen such a good baby - and I've had five of them now! She absolutely never cries unless something is hurting her or she is hungry. We are so blessed to have this sweet little munchkin!

Nancy

What a Day!

Update: We had to call an ER nurse up to the floor (after the PICU nurse gave up) to put Rebekah's IV in. Even though I did not want to have the IV in her scalp, that's where it went. I don't have a problem with it in her scalp, just that she always pulls them out and we have to start all over. Just pray that this one stays in until we no longer need it!

Original Post: Just when things were starting to get a little calm around here, our little hospital world went crazy! This afternoon was so calm and peaceful with only 12 patients on the floor. In fact, it was so calm that they sent our nurse home and we had a new nurse, Noelle, who is very sweet. Then the chaos started. There was a fire (albeit a small one) in the NICU downstairs, there was a domestic altercation on our floor resulting in a visit by our friendly local sheriff's department, there was a disgruntled patient complaining about a nurse resulting in the nurse manager being called in, and lastly there was a suicide in the parking garage. Oh, and within the space of an hour, our floor received three new patients. I think I'm ready to move out!

So, in the midst of all of that chaos, Rebekah's IV blew out in her foot. She had been getting fussy, but I figured she was just ready to eat. So I was pumping and getting her bottle ready when I noticed her sock was wet. Her IV solution had finished earlier and our nurse had changed out the bags and was holding on to Rebekah's sock while she was working on putting in the new bag, so I figured she had just gotten the sock wet then. So I proceeded to give Rebekah her bottle, which she drank a little of and then kept getting more and more fussy. She kicked her foot up in the air and I saw that it looked a little swollen. When I looked more closely, I realized that the gauze and padding around her IV was soaked with solution and her foot was very swollen. I immediately stopped her pump and called for the nurse. They determined that the IV had, in fact, blown and went to talk with the attending doctor (Dr. Brown, affectionately known as Dr. Seth - he's in residency and is going to make a terrific doctor!). Dr. Seth spoke with Rebekah's cardiologist and they decided that she really needed to have the IV fluid to keep from dehydrating, which is what happened during her last hospital stay.

Five nurses and four attempts later, we still do not have an IV in yet. Rebekah has great scalp veins, and an IV can usually be placed in one attempt in her scalp, but she pulls them out within hours, forcing us to repeat the whole process. I am very protective of her left hand because she sucks on those fingers as her comfort measure, so I don't want the IV in that hand/arm. That leaves one arm and two feet. We are waiting on a NICU nurse to come and attempt an IV since they are used to dealing with very itty bitty veins. Hopefully we will get something soon.

When the nurses took the pulse oximeter off Rebekah's foot, we realized that her foot had blistered underneath from the tape used to hold it on, so she has a nice raw spot on her foot. I don't think Rebekah has a latex allergy or anything like that, but she definitely has sensitive skin. That pulse ox had been on since we arrived in the ER Monday night, so I probably should have requested that it be changed. Just one of those things I didn't think about, but will be more aware of in the future!

When Dr. Markowitz came by this morning, he wrote orders for an NG tube (the feeding tube through the nose) to be placed under x-ray and for continuous feedings to resume. Rebekah had an NG tube for several weeks prior to the g-tube being placed, so we have been this road before. The hope is that she will be able to have continuous feeds through the NG tube just until her new g-tube arrives and we can have it changed. If the feeds through the NG tube are successful, we will be allowed to go home and wait for the tube at home. If not, the doctors will do some more checking to see why she is not tolerating the tube feeds.

We did a trial run of the NG tube for about an hour around 6:00 this evening, and it seemed like she tolerated it well. We will be using it through the night and reevaluate tomorrow. But it looks possible that we might actually go home tomorrow. We'll see what happens.

Please pray that we will be able to get this IV in to run fluids until Rebekah gets back up to full continuous feeds again!

Nancy

Cute Pictures!

Disclaimer: If you haven't read today's first post, this one will make no sense. Scroll down to read the post "Another New Plan" first.

We have tried step one of today's plan and the score so far is G-tube-2; Rebekah-0. We deflated the balloon and taped it down so we didn't lose the placement, and tried tube feedings beginning at 5cc's and hour. That means over the course of an hour, Rebekah would get what amounts to about a teaspoon of milk. Guess what!? It didn't work. After about an hour and 15 minutes, Rebekah was screaming, upset and her heart rate was elevated. So, our sweet nurse, Gail, is off to call the doctor to let him know and to double check that the next step is changing the tube itself.

In the meantime, before all of this happened, Rebekah was being Miss Cuteness herself. Enjoy the pictures and even a short video clip at the end (Hey, Drew, I finally figured out the video!).

Showing off the latest in high fashion hospital wear!

I lasted about five minutes playing in the bumbo before I got tired.

Sound asleep with my dolly. Look at how pudgy my arms are getting!

Look at how cute I am! Mommy really loves this picture!

Rebekah was being so cute playing in her crib! Right at the end when she starts to get fussy is about the time that we think her g-tube feeds were bothering her. From there it went downhill until we shut the pump off. About five minutes after turning the pump off, she was perfectly calm and went to sleep. Please pray that the doctors will figure this out!!

Drew and I are actually getting dressed up tonight to go to a work-related banquet (his work, not mine! :). A sweet nurse friend of ours who is not working tonight has offered to come and sit with Rebekah while we are gone. It will be fun to get out and do something besides sit in Rebekah's room (although I wouldn't trade being with her for anything!). If we can, I'll try to get a couple of pictures. I haven't gotten this dressed up in a long time!

Nancy

Another New Plan

Wow! I think I've lost track of which plan we are on now. It feels like a couple of dozen so far, although I know it hasn't been that many.

I look so cute with my leg warmers!

When we used Rebekah's g-tube last night with breast milk in it, she had the same reaction to it that she has had all along - extreme irritability and fussiness, and tenderness around her belly especially around the g-tube. That little test basically confirmed in Dr. Darby's mind that the g-tube really is the problem.

However, right now Peds Surgery does not believe that Rebekah has a g-tube problem. She has had x-rays and contrast studies done that do not show any problems with the g-tube. They are contending that she has a problem with c. diff. or with her formula or something else. So, Rebekah's doctor's goal is to prove to Peds Surgery that 1) Rebekah has a problem with her g-tube and 2) what the problem is.

I'm a happy girl as long as you leave my tube alone!

This morning, we have come up with yet another process-of-elimination plan. We are going to deflate the balloon in Rebekah's g-tube and proceed with a tube feeding (of breast milk or Ellecare since we know that either one works fine). If Rebekah does fine with the balloon deflated, we are going to assume that the balloon is either pressing on something uncomfortable or blocking the pyloric (the opening from the stomach into the intestines through which food passes). We would then re-inflate the balloon with a small amount of water (3cc's instead of the normal 5cc's) and repeat the test. If we can use the tube with a partially deflated balloon for a week or two, that would be enough to get us by until Rebekah's new (correctly-sized) g-tube comes in. The new size is actually a special order because it is so small, so it is taking 2-3 weeks for it to be made and shipped.

If the deflated balloon still results in the same fussiness and irritability, we are going to try replacing the g-tube altogether with Rebekah's spare tube and see what happens.

Look, Mrs. Beth! I'm playing with my feet!

These are the two experiments that we are going to try today. If either of them works, then we will be good and will only stay an additional 24 hours to run through an entire feeding schedule to make sure there are no other problems that crop up. If either of the experiments fail, we will be back to the drawing board tomorrow to come up with a new plan.

Rebekah's doctors are determined, though, to get to the bottom of the issue and resolve it no matter how long it takes. I'm just hoping for sooner, rather than later! :)

Nancy

Today is a new day!

Sorry I haven't updated earlier today! I know you are all wondering what is happening after the last updates last night. I didn't update because, frankly, we didn't have any news to update with! Rebekah remains off of her g-tube feeds, and we have really just been hanging out waiting to see her doctor.

Which brings us up to our doctor....he was just here a few minutes ago, and I think we have a new plan. Although, it is subject to change at any time, remember?! By the way, I know I have said it before, but we are truly blessed with some of the best doctors in the area! Dr. Darby walked in, sat down in the recliner and said "let's figure this out together." He is just as determined to come up with a solution to this problem as we are! We are so grateful for the doctors, residents, nurses and other staff here and for the way that they truly care for each patient. We have never felt like just another chart number or bed number. It is a great feeling especially when you have a child as medically complicated as Rebekah!

So, all of that to get to our new plan. It seems that Rebekah's problems are coming from either the g-tube itself or the Ellecare formula that we are using in the g-tube. Yes, she has c. diff. and is being treated for that, but Dr. Darby seems to think that if the c. diff. were bothering her digestive tract, then she would have the same reaction to breast milk going into her stomach by mouth as she has when Ellecare goes into her stomach through the g-tube. After a lot of discussion, we (Dr. Darby actually, I just nodded my head and agreed!) decided to switch things up a little to try to eliminate one or the other as a problem. So, unless the plan changes, Rebekah is going to get a little bit of Ellecare by mouth this afternoon to see what happens. She will also get a little bit of breast milk in her g-tube to see what happens there as well. If she tolerates the Ellecare by mouth, we can assume that the problems lie with her g-tube. If she tolerates the breast milk in the g-tube, we will assume that the problem is the Ellecare. If she tolerates both, I'm going to throw my hands in the air and scream! Okay, not really....maybe. Hopefully one of those trials will give us some information to come up with a solution we can work with.

Several weeks ago this would not have been too big of a deal because we were not using the g-tube prior to Rebekah's last hospital stay. However, since Dr. Darby put Rebekah on continuous nighttime feeding with the g-tube, she has gained a pound and a half. The continuous feeding was really working well and allowing Rebekah to grow faster than she ever has in her little life! We really need to find a solution that will allow us to use the g-tube with a higher calorie formula to get the extra nutrition to our little girl.

As I said, that is the current plan, and always subject to change. Dr. Darby is still going to consult with the GI (gastroenterology) doctors to see what other ideas they might have, so he may decide to do something differently after talking with them. I will update later to let everyone know how things are going!

Nancy

Answers

Second Update: Per doctor's orders, we have discontinued the feeds again. Rebekah had more blood drawn to see if anything else is going on, and we'll see what happens from here. We will not be resuming feeds until at least tomorrow morning, if then. Rebekah also will have consults tomorrow with Peds Surgery and GI to see what else they might find or if they have any other ideas.

Update: As of about 6:00 this evening, Rebekah's heart rate became elevated, her oxygen sats dropped, and she was increasingly uncomfortable and fussy. Our nurse noted the changes, as well, and is currently calling the doctor to find out what he wants to do. Rebekah has only been using the feeding tube about two and a half hours, and she has gotten about 12mL's of formula, so I'm not sure what will come next. I will update more when we hear back from the doctor.

Original post: After meeting with Rebekah's doctors early this afternoon, I finally feel like we have some answers....maybe! :)

One of Rebekah's stool samples came back positive for clostridium difficile, better known in medical circles as c. diff. Basically, it is a growth of the bad bacteria in the intestines and can have some potentially harmful side effects if not treated. So, Rebekah is on a seven-day regime of Flagyl, which is an antibiotic used to kill off the bad bacteria in order to allow the good bacteria to build up. There are several risk factors for contracting c. diff., and Rebekah meets almost all of them - except for being over the age of 65; she's not quite there yet! :)

Some of the risk factors that Rebekah has are: taking broad-spectrum antibiotics, especially for an extended period of time (she was on broad-spectrum during her last hospital stay), being hospitalized, having a weakened immune system and having previous abdominal surgery or gastrointestinal procedure. Now that she has had c. diff. once, she is more at risk for contracting it again, so it is the first thing that will be checked from now on when she has persistent diarrhea.

In honor of Daddy's birthday, I rolled over all by myself!

There shouldn't be an increased risk of exposure to c. diff. for the boys as they are all in good health and Rebekah is not potty-trained, so they are not sharing a toilet with her. We just need to be cautious of washing our hands immediately after changing Rebekah before changing Caleb's diapers.

I'm adorable!!

Rebekah is currently using her g-tube for a very small (5mL's per hour) amount of continuous feeds. See, I told you the plan was subject to change! Since we know what Rebekah's problem was and we are now treating it, the doctor thought we could safely start out using the tube slowly to see how things go. So far things are going well, and we are going to be working up another 5mL's every four hours through the night and into tomorrow. The new plan is to see how Rebekah does and possibly go home late tomorrow, or more likely early Saturday. Please pray that Rebekah gets over this c. diff. quickly and completely and doesn't catch anything else while she's here! We need her to be well for her heart catheterization on the 26th!

Nancy

Happy Birthday, Daddy!!

Daddy, I made a surprise for your birthday, and I'll give you a clue....it has something to do with the color blue!

Love,
Rebekah

It's a Beautiful Day in the Neighborhood

Or, at least in our hospital room! The sun is shining, Rebekah has had some play time and is now working on taking a morning nap.

We had a good night - lots of sleep - until the resident from Pediatric Surgery came in at 5:45 (!!) to check Rebekah's g-tube. I'd like to know who sends these doctors on rounds before 6:00! Anyway, the Peds Surgery group has discussed Rebekah's tube and has come to the conclusion that they do not want to attempt using it again until all of the results from her blood work and stool cultures come back. According to our nurse, it takes 24 hours for the stool study to be completed, so we will not be using the g-tube today. We did not get those samples until close to 10:00 last night, and the doctor did not want to start using the tube at night, so it will be sometime tomorrow before we are given the green light to use it. At least, that is the plan right now. In another hour it may change, but that is our current plan.

Rebekah apparently woke up happy and in a very good mood! After the resident woke us so early, I sneaked Rebekah into my bed and we fell asleep for another cat nap. When Rebekah woke up, she was all smiles and playing. I laid her back in her crib so she could play with some of her toys, and she promptly rolled over onto her tummy - something she has never done before without at least a little help. The nurse and I were so excited to see her rolling! She played on her tummy for quite a while, then promptly rolled back over to her back, started sucking on her fingers and went to sleep.

On that note, I am going to sneak into the shower quick while Rebekah is sleeping. More updates to come as we get them!

Nancy

Forward, then back

This morning Rebekah was looking great, and I was really excited about the possibility of going home tomorrow, but now....not so much.

Rebekah is back on oxygen at 1/2 liter. It's not much at all, but her sats dipped to 68 this afternoon without warning and hovered in the low 70's for long enough that the respiratory therapist (RT) felt we needed her back on a bit of oxygen. Since then, she's been maintaining sats around 90. I asked the RT to listen to Rebekah's lungs, and she did hear some congestion, but no wheezing. That's good! I'm just hoping we're not heading down the same road we were on three weeks ago.

We are still not using the g-tube, nor will we be using it tonight. After discussing it with the doctor, he felt it would be better to run her feeds during the day tomorrow while more doctors and staff are on duty so that they can respond quickly if there is a problem. For now we are continuing to feed by mouth as Rebekah wants it, although she is still not eating as much as she was before we were admitted.

The doctors have ordered an amazing amount of labwork for Rebekah - things with more letters than I can count! She had blood drawn for several test and we are trying to collect stool samples to check for allergies, infections, bacteria and a lot of other things that I don't remember. Then we will be waiting to see what the results of those cultures are.

Based on all of that information, the doctor isn't even thinking of discharging Rebekah before Friday, and possibly not then. It will all depend on how well she does tomorrow during her tube feeding and on the results of her labwork. Until then, we get to hang out together and enjoy some snuggles!

Drew and I would like to say a huge thank you to everyone who has been helping out with the boys and with meals, both during this hospital visit and the last one. We are so blessed to have close friends and family to help, and it really takes some of the pressure off of us! That being said, please keep our boys in mind as you pray for Rebekah. Understandably, they are upset that their sister is back in the hospital and that Mommy is not at home. Grampy and Grammy arrived this afternoon, so at least the boys will be at home and back to more of their normal routine.

Much love,

Nancy

Good Morning, Sunshine!

After what feels like weeks of freezing cold (for us) temperatures and clouds, the sun is shining and it is a balmy (relatively speaking) 40 degrees outside!

Rebekah had a great night last night! She had two bottles before bedtime and then slept through the night (read: Mommy got to sleep through the night!!). She had another good bottle around 9:30 this morning and is snoozing again. I am so thankful for a good night of sleep! After only sleeping about 2 hours Monday night, I was pretty much running on adrenaline yesterday. I was beginning to feel much like a zombie by last night!

We still haven't tried using Rebekah's g-tube yet. I am currently waiting on the doctors to round so we can make some decisions about Rebekah. Other than the uncertainty of her g-tube, she looks great. The nurses removed her oxygen this morning, and her sats are staying in an acceptable range, and Rebekah has not had a fever since yesterday afternoon. It seems that whatever was in her system has made its way out. Now the questions remain as to what exactly did happen and is there any way to prevent or treat the cause so it does not happen again. Those are questions that I hope to have answered today.

I am guessing that if all goes well today for Rebekah (and if there are no further tests that need to be done) that we will be discharged tomorrow. That is only a guess from my very un-medical background, so we will see what the doctors have to say.

That's about it for now. I will update later when I have more information!

Nancy

Better Trends

So it seems that whatever little Miss Bekah's problems are, she is slowly starting to regain lost ground. We are still not using the g-tube until we meet with the doctors tomorrow to see if they want to do any further testing with it, but we have been given the green light to resume bottle feeding. So far Rebekah has had two bottles of breast milk tonight and she has done well. Her fever has also dropped throughout today, which is always a good sign.

All tied up in tubing!

Tonight's plan is to bottle feed as much as Rebekah tolerates it and hopefully catch up on some much-needed sleep! We will see what tomorrow holds when we get there. :)

Nancy

P.S. We'll sleep after the fire alarm, that is!

Much Needed Update!

Hi, all! I apologize for the somewhat vague and cryptic update earlier today. Rebekah was admitted to Greenville Memorial around midnight last night, and the first room we were in did not have enough internet signal for me to access the blog. So, I had to send a post from my cell phone and I was allowed only 160 characters. I was trying to be as brief and informative as I could get into 160 spaces!! :)

Rebekah is doing much better this afternoon, but we still have not found the cause of her distress. When we arrived at the ER yesterday evening, Rebekah was retching badly, not taking a bottle and beginning to become dehydrated. After some quick tests to rule out the flu and a few other things, the doctors decided to admit Rebekah to see how she did overnight. We ended up in the PICU because there were no beds on the general pediatric floor, and I was thankful that we were in the PICU. From midnight until about 5:00 am, Rebekah was very fussy and had several severe bouts of retching; so much so that she was having a hard time keeping her oxygen levels up and had to be put on oxygen. The doctors started IV fluids to keep her hydrated, and we attempted to give her the normal continuous feed that she would have gotten through the night at home, only at half the amount (13 cc's an hour instead of 26). In about thirty minutes, Rebekah's stomach became very swollen and hard as a rock. The x-ray technicians were called to do an x-ray to check for obstructions and placement of the g-tube. By the time they got to Rebekah's room about 45 minutes later, the swelling had dissipated and the x-rays were normal. So, the doctors decided to discontinue the feeds until further tests could be done today, and we finally got to sleep around 5:30. If this post tends to ramble and make no sense, I'm blaming it on lack of sleep! :)

Rebekah has not had any feeds today, either by bottle or by g-tube. She developed a fever this morning (101.5 was the highest) and has continued to need a small amount of oxygen to keep her sats in an acceptable range. Around 2:00, Rebekah and I went downstairs to radiology to have a contrast study done to check again for any obstructions or g-tube problems, and the doctor was not able to find anything wrong. So, now we are waiting to hear back from the pediatric surgeons to find out what they want to do next. Rebekah seems to be resting comfortably and has been sleeping off and on for most of the day. It seems that we will be taking this hospital stay one day at a time to see what happens next.

We are now in a room on the general pediatric floor, and I have internet now (obviously! :). So hopefully I will be able to keep everyone more up-to-date on how Rebekah is doing. Hopefully we will be able to get a little more sleep tonight than we did last night.

Nancy

Update: Rebekah is at Greenville Memorial with significant abdominal distress. She is also running a fever and having problems with her g-tube. Please pray.

News

Miss Rebekah has had a busy week! After her cardiology appointment on Tuesday, Rebekah saw her pediatrician on Wednesday. We discussed a variety of information.....feeding, development, Synagis shots and congestion.

Rebekah will be getting her Synagis shots every month at her pediatrician's office during RSV season. This series of shots is for protection against RSV, which is a cold virus that can cause severe complications in infants. The complications can be fatal in babies whose immune system, heart or lungs are already compromised. We are very thankful that Rebekah qualified for the shots and that she is able to get them at her pediatrician's office!

As for feeding, we are marching onward! Rebekah has been given the green light to begin solid foods. We are beginning with a teaspoon of rice cereal and will be working up to a tablespoon of cereal twice a day. We want to start slowly to make sure Rebekah's system will handle the addition of cereal. If Rebekah does well with the cereal, we will begin working in other foods in a couple of weeks. So far, the cereal has been going down well. We are continuing the nighttime feedings as well to help with Rebekah's calorie intake.

As far as development, Rebekah is moving right along! She is smiling, babbling, cooing and interacting with us, especially with her brothers. Rebekah is grasping toys, transferring toys between hands and bringing toys to her mouth. We are still working a lot on the physical development - rolling over, sitting up and holding her head stable consistently. We are thankful for our therapists and their work with Rebekah!

Rebekah is still struggling with some respiratory congestion. We suspect that Rebekah is teething, but the congestion is a problem either way. The congestion is not bad and does not seem to affect her breathing much, so we are just watching it for now. Hopefully it will clear up on its own without any intervention.

We also saw the pediatric surgery group here in Greenville this week so they could take a look at Rebekah's g-tube. We have had problems with the mic-key button that Rebekah has deflating every two to three weeks (it should be lasting 3 to 4 months), so we wanted a second opinion. The surgeon has ordered a new g-tube and it should be in sometime early next week. When it comes in, they will replace Rebekah's current tube with a slightly different one. The surgeon also ordered a different size tube than the one Rebekah currently has, so we are hopeful that it will be a better fit.

That's all the latest news for now. Rebekah has a week off with no scheduled appointments other than the g-tube replacement when it arrives. We are hoping for another good week and some more weight gain!!

Nancy