Sunday update-12/20

Nancy has her hands full with Bekah so I will attempt to fill you in. The last couple of days have been up and down with Bekah. She is still in the hospital and not really improving a lot. As of this morning she is having trouble keeping her oxygen sats in her normal range while being on oxygen. If they remove the oxygen then her sats drop to the low 70's. They are attempting to give her some more oxygen to see if they can stableize her oxygen sats.

The nurse this morning made comment that Bekah's right lung sounds more congested and labored then yesterday. This is the lung we have been trying to protect as it is functioning on its own, but not connected to her heart. They are thinking Bekah my have fluid building up in her right lung. She had trouble passing enough fluid thru the night and this may explain why.

Her heart rate is also hanging out in the low 200's which is way up from her normal 150's.

We know she is in the Lord's hands and he will carry us and her thru all of this. We want to again say thank Lord for all the blessings of our little ones.

Also thank you to all the family, church family, and friends for the support, time, and effort you have graciously given to help us.

D & N

Admitted

After a couple of weeks of fighting an upper respiratory illness, Rebekah was admitted to Greenville Memorial last night. We were met in the Children's ER yesterday afternoon by Rebekah's cardiologist, Dr. Lucas, who ordered an EKG, echocardiogram and chest x-rays. The good news is that Rebekah's heart looks good! We were concerned that some of the symptoms she was exhibiting were cardiac related, so we were very pleased to hear the good report on her heart.

However, Rebekah's lungs looked hazy, so at this point the doctors are saying that she has viral pneumonia. We are still waiting on the results of some labs and cultures to come back to know for sure.

When we first arrived in the ER yesterday Rebekah's O2 sats (oxygen saturation - the amount of oxygenated blood going to the body) were around 80-84%. A normal person's O2 sats are 100% and Rebekah's are usually around 90%. Rebekah has been on blow-by oxygen since we came in yesterday, and her sats are hanging out around 87-88% now. We did have one episode yesterday and again this morning when they dipped back into the upper 70's/low 80's for about an hour, but they are back up now.

Rebekah has also had a couple of times when her breathing has been more labored since we checked in yesterday. Specifically today her breathing has been harder when she is drinking a bottle. Nothing too major, but given Rebekah's fragile medical condition already, the doctors want to be sure they have all their bases covered.

Now for today's doctor update....Dr. Darby came by around 11:30 and checked Rebekah out. She is still pretty congested, so Dr. Darby wants to use a nasal steroid to try to dry up some of the mucus and also a broad spectrum antibiotic just in case there is a lingering sinus or respiratory infection going on. Because of Rebekah's lower O2 sats and her labored breathing during her bottle this morning, Dr. Darby wants to alternate bottle feedings with g-tube feedings to give Rebekah a bit of a break in working so hard to eat. There is such a balance between keeping her used to working for her food (bottle) and allowing her to have a bit of a rest (g-tube). No one wants Rebekah to get "lazy" and decide that it is easier to refuse the bottle and have all of her feeds tubed. So, basically that is the plan for today. Tomorrow we will have another chest x-ray to compare with the one from yesterday and see if Rebekah has made any progress (hopefully!!) and we will go from there. On the one hand, Rebekah really isn't sick enough to warrant a hospital stay, but with her medical conditions, she isn't really well enough to send home. If she was a "normal" child, medically speaking, we would never have been admitted, but Rebekah likes to do things her way. :)

I've been enjoying the view of rain from my window and watching a few snow flurries fall with it. Zachary's and Justin's schools had early dismissal today because of the weather, so they are home already, and I am sure they are hoping for snow! The latest forecast doesn't give much hope for any accumulations, but that doesn't stop the excitement!

We have had great nurses and a great experience here so far. We have also had some great friends pitch in and help out with the boys and meals. A special thanks to Darren and Sarah for watching the boys yesterday and today. That has been a huge help!! I was also grateful for Rebekah's pediatrician, Dr. DeMoss coming to the ER last night to see us. He is Rebekah's primary care physician, so technically, he is her admitting doctor, but he could easily have done his paperwork over the phone or fax. He hung out with us for about an hour before we moved up to the floor. I just can't say enough about all the wonderful doctors and medical providers we have!

That's all the current news for now. I'll update with any new information or changes that happen. Thank you all for praying for Rebekah Grace!

Nancy

On the mend

Thank you all for praying for Miss Bekah! She is doing somewhat better after a few doses of antibiotics. As it turns out, Rebekah probably had an ear infection. I say probably because her doctor wasn't 100% sure that her ears were infected, but they did not look normal, either. Based on the appearance of her ears combined with her other symptoms, we are treating Rebekah for an ear infection. The big news, however, is that her lungs are clear. That was very exciting to hear!

Rebekah's weight check this week was okay. Just okay. She did not gain even a fraction of an ounce, but on the other hand, she did not lose any weight, either. So we went back to the drawing board! As some of you may know, our fourth son, Caleb, had multiple food allergies that he eventually outgrew around the age of 15 months. One of those allergies was a dairy protein allergy. It seems likely that Rebekah shares this allergy with her brother. So, I am back on a dairy-free diet to see if it makes any difference in Rebekah. With Caleb, we knew right away that he had eaten something (or I had eaten something while he was nursing) that he was allergic to because he would throw up shortly after eating it. Because of the Nissen procedure, Rebekah does not throw up (although she does gag), so we are learning that if she is exposed to an allergen, it all comes out in her diaper. We are also including a higher calorie formula in her diet to increase the calories that she receives from breast milk. Our next weight check is next Wednesday, so please pray that we see some progress then!

We were also able to visit the lab and try to have Rebekah's blood drawn again. This time, our favorite technician, Nancy, was working and she was able to get all of the blood needed for all five tests on the first try. Praise the Lord! She was very upset that Rebekah had to go through two days of attempts to get blood. I told Nancy that she wasn't allowed any more sick days! Seriously, we will not even schedule a blood draw if she is not there. It is worth a little scheduling inconvenience to get it done the first time.

The troops are all up, so I have to run. Thank you all again for your prayers for our family and for Rebekah!

Nancy

Prayers Needed!

Rebekah woke in the middle of the night very congested and not breathing well. She had a temperature around 100 at 3:00, so we gave her some Tylenol. She did nurse a little and then fell asleep again and slept through what was left of the night. I will be making a call to her doctor this morning to see if we need an appointment today. Since Friday night Rebekah has been tugging at and messing with her left ear, so it is quite possible that she has an ear infection. Right now I am most concerned about her breathing/congestion. Because Rebekah's right lung is not functioning, it is imperative that we keep it free from infections. Please pray that we will get this little cold cleared up quickly!

Also, we have another weight check this morning. Rebekah has really been eating well in the last 5-6 days, so I am hoping to see at least a little progress! Pray for wisdom for us all as we discuss Rebekah's feeding plan for the next week.

And last, we were never able to get Rebekah's lab work done last week. She ended up with nine attempts total (4 in the arms, 1 in the wrist, 2 in the hands, 1 in the foot and 1 in the scalp) and the technicians were only able to get 1/2cc of blood. It was enough to run one test (a CBC), but Dr. Johnson ordered five different tests. The CBC looked good, so we were pleased about that! Today we have to attempt drawing blood again to complete the rest of the lab work. There is a technician named Nancy that was successful in drawing Rebekah's blood a couple of months ago, and she was out sick last week. We are praying that she will be back today and that she will be successful!

Thank you for praying for our sweet girl!

Nancy

Immunology

Rebekah and I met with her Infectious Disease doctor this morning, and we had a really good appointment with him. Dr. Johnson was pleased that Rebekah has not been sick so far, and we are too! Rebekah's tonsils look good and are a good size for her. Apparently, it is not uncommon for kids with DiGeorge to have tonsils that are too large and need to be removed. Rebekah's ears also look good with no signs of any infections, either now or in the past.

We won't have any information about Rebekah's immune system until we have the results of her labwork. And, unfortunately, the lab technicians were not able to draw blood today because they couldn't get a vein that would cooperate. After several tries, the technicians decided to give Rebekah a break and try again tomorrow. When we finally do get the labwork done, it will be a couple of weeks before we get the results back. Assuming there are no major issues with the labwork, we will not have to return to see Dr. Johnson for two months. If there are some problems that require immediate attention, his office will reschedule us an earlier appointment.

Tomorrow we have another weight check and another attempt at labwork. Hopefully tomorrow's attempt goes better than today did!

Nancy