Health Update: 2/10

I'm sorry it's been so long since I have provided an update. A lot has been happening and we've been very busy at doctor appointments and such. I will try to summarize and keep this simple and informative.

On January 29th we took Maddyn to the hospital to have the Upper GI performed. Poor thing was miserable, but she did a great job. Dave & I were so proud. The radiologist told us the Upper GI was going to test for 3 things. The first 2 were structural, and if she failed those tests it would mean with 100% certainty she would need surgery. She passed!!! The 3rd test was for acid reflux. They test reflux in three stages (severe, moderate and slight). She never even made it to stage two or three, b/c she failed stage one (severe) in 18 seconds.

We got a call back from Dr R (our pediatrician) the next day and she said what the radiologist had said- that it is severe acid reflux. The next step was coupling these test results with the Apnea Monitoring results which we still do not have. Both Dr R and Dr M (the neonatologist) were quite frustrated with the company supplying the data, and were going to switch companies to a new company, but we found out they would have required an overnight hospital stay to get the test done that Dr M wanted done. So instead, Dr M decided to do the study himself. He requested another 24 hour straight (we've been letting Maddyn off the monitor during the daytime- but this time he wanted her to keep it on all day) monitor. After that 24 hours, the company was to come and load the data, print the data and overnight it to Dr M. The company dropped the ball again and did not get Dr M the data until the following Tuesday (2/5).

On 2/1 we went in to Dr R's for our appt. She weighed Maddyn again and said that she could not increase Maddyn's dosage of Pepcid. Her dosage was already the maximum for her weight. She didn't feel comfortable putting her on stronger meds without us seeing a specialist or having the Apnea results. So she wanted us to see a Pediatric Gastroenterologist and gave us a referral. She wanted us to get in within the week.

So on Wednesday 2/6 we went to Loyola and met with Dr G, a pediatric gastroenterologist. She was great. She went over the GI results as well, and we discussed Maddyn's choking, vomiting, wheezing, snorting, etc with her. Maddyn was having a hard time breathing while we were there, so Dr G actually witnessed her doing this firsthand. She said her group is doing research on prevacid and they feel it is not a medicine that should be given to small babies at this point. She said she doesn't like to give it to babies under 1 year if she can avoid it. She said Reglan will make Maddyn even fussier- and since she's been fussy, she wants to hold off on that too. So she switched us to Zantac now but she said it would not be any stronger than the Pepcid. It was just her preference. She also put Maddyn on erythromycin. She said that will help move the food faster from the stomach to the intestines- hopefully reducing the reflux.

But b/c of her breathing and all of the apneatic episodes, she wanted to have Maddyn do a Video Swallow Study. So we had to have that scheduled. This study is going to test for aspiration (where the food goes down the trachea instead of the esophagus and is causing all of her problems). She knows Maddyn has reflux, but is concerned that we need to check for aspiration as well. So this study will help us rule it out (or find out if it IS aspiration). If it's aspiration, we have a whole other set of steps to take. Dr G also wanted to know the results of Dr M's apnea study.

On Thursday and Friday (2/7 and 2/8) we had more doctor appts/mtgs at Children's and Delnor. This was to get our Apnea results. GOOD NEWS!!! Dr M said that Maddyn was not showing signs of Apnea. WOOHOO. So Dave and I got all excited and were ready to hand over the Apnea monitor (which we were only supposed to have for a day..and now it's been 3.5 weeks). BUT, we were told that b/c there is a chance for aspiration (Dr G had shared this with them), they do not feel comfortable having Maddyn off the monitor. So she has to continue being on the monitor until they can rule out aspiration. :( This was a huge blow to dave and I. We were really hoping this was going to get easier. So right now, Maddyn has to stay on the monitor.

So next steps:
On 2/13 (Wed) we go to the hospital to have a Video Swallow Study done in Radiology.
On 2/15 (Fri) Maddyn goes in for her 2 month appointment with Dr R (and she gets here shots...poor thing, as if she hasn't gone through enough!)
On 2/20 (Wed) we meet with Dr G again and get the results of the swallow study.

After all of this, Dr G, Dr M and Dr R will be able to determine what meds Maddyn needs to be on/stay on. And what we can do to make her better. Right now she stays on the Zantac and Erythromycin, and continues to wear the Apnea Monitor for at least 12 hours each day until we hear otherwise. As annoying as the monitor is, we know it has a purpose. It's just so hard knowing she can't sleep with the monitor going off at least one to two times an hour.

Her choking and breathing has been worse lately, so we hope these weeks go by fast so we get some answers. Thank you all for your prayers and thoughts. We'll continue to keep everyone updated!!!

I have TONS and TONS of photos to share. We have professional photos, and baptism photos and Superbowl photos. So I will post those Mon or Tues!!!