*Primary Childrens, again*

Our last overnight stay at PCMC was absolutely the worst experience at a hospital, period. So when her Pulmonologist said we needed to stay again for her pH probe I was not thrilled at the idea. We stayed in the PACU (post-op unit) last time for her brain MRI and this time was the RTU (rapid treatment unit). Tevin and I arrived with Delilah (Tev came to keep me company until Scott got off work and out of school) at 3:30pm on Monday, and the inpatient admitting rep was overly nice to me and said how they were expecting us. Weird. So we made our way to the RTU and right away were met with smiles and were taken to a room where Delilah got weighed (she is now 19lbs!!!!) and her vitals taken. Her RN was in shortly after to give us handouts on her procedure, how the RTU works and a handout on "Getting all your questions answered". lol. They all left and Tevin looked at me and said "After you filing a complaint they must have flagged your account because everyone is kissing your butt!" And they were. Ive been to PCMC many times and even worked there for a year and this was not "the normal". They try to be nice and attentive but they are frequently understaffed and very busy so they don't come off as very happy to see you.

The RN explained to me that she had to drink unthickened apple juice every 4 hours. I explained that she has bad reflux and apple juice makes it a lot worse and she already hadn't been on any meds for 4 days. At the least it needed to be thickened to help prevent aspiration. She called the dr who said it could not be thickened but they would allow me to feed her Nutramigen formula thickened with rice cereal every other feed. I knew we were in for a long 24 hrs. Her dr came in to see her and reiterated how the feeds needed to be. I protested but got nowhere. It was apparent that if we wanted to do the test we had to do it their way. So against my better judgement we went ahead with the test.

About 4:15pm the endoscopy nurses came in to access her and place the pH probe. The placement involved threading a feeding tube with two probes in it down into her esophagus, securing it to her face and hooking it up to a monitoring belt. She hated this to say the least and it took 3 of us to hold her down. They then did an xray to confirm that the placement was correct then went over how to use the monitoring belt with me. It measured the pH in the bottom of her esophagus as well as at the top. Neutral stomach acid pH is 7 and hers ran about 6 but when she refluxed it went as low as 2.3. The closer the number is to 1 the more acidic the reflux is and the more harmful it is to her throat and lungs. This monitor recorded all the times she refluxed in a 24 hr period. We also had to manually push a button every time she started to eat and finished, cried, coughed, vomited and went from laying to sitting. So pretty much someone needed to keep an eye on her at all times. This was very exhausting! And it didn't help that she refused to sleep in the hospital crib and would only sleep if Scott or I held her or she laid in our arms on the couch/bed. We took 4 hr turns watching and staying up with her while the other one of us tried to sleep. The nurses came in every 2 hrs to look at her monitor and every 4 hrs to remind us to feed her and the aids came in every 4 hrs to check her vitals. Unfortunately the aids and nurses didn't come in at the same time so every time we would finish feeding her and she would fall asleep the aids would come in and wake her up :(

The first feed she had was apple juice. She had not eaten in 6 hrs and was hungry so the nurse was sure she would drink 4 oz with no problem. I asked her to stay in the room because i felt like she would have a hard time. No surprise, i was right. She immediately started to cough, gag and turn purple. The nurse told me she had to eat all 4 oz in 15 min or they would put another feeding tube in and feed her that way. She gagged it down and immediately vomited and screamed. The next feed was her formula which she did much better with. Every time she had the apple juice she had a hard time and I hated to see her in so much pain, knowing it was from what i was feeding her. We made it through the night with the help of a very nice aid who each time he came in Lilah would giggle hysterically. He made the mood a bit lighter. She did pretty well having the probes in and didn't really try to pull them out except when she would rub her eyes because she was tired. She was such a trooper. It was finally 4pm and we were told we could go. They took out the probe, had us sign discharge papers and we were out of there! She was much happier when we got home. The puppies greeted us at the door and just licked her feet. It was so nice to be home.

Last night was long. I knew it would be hard on her because last time we had a hospital stay she had a hard time adjusting back to our home schedule. She went to bed like normal but then kept waking up every few hours crying and whimpering. I would go in and soothe her and she would stop. She never actually woke up, it was more like she was scared or having a bad dream. So sad. Today was much better since we started her meds again. She is still spitting up a lot, choking and gagging after feedings but its better than it was last weekend. At least we know she needs the meds. We will get the test results back sometime next week and will get a plan from her doctor as to what we do next. If the test comes back that her reflux is very severe she is planning on sending us to a GI dr to discuss surgery, which is not what we want. We have an appt with GI in August already so at least we only have to wait a few wks to discuss any other options with them.

Since we haven't gotten much support from her doctors I have had to research and find treatments on my own. I found a great support group on babycenter.com who are moms that have kids with similar symptoms and problems. They have shared so much with me. Its because of them I took her off the antibiotic which has helped so much! Its also because of them that I learned Gerber brand rice cereal has milk protein in it which we are sure she is allergic to. We switched her formula to a hypoallergenic one called Nutramigen which still has milk protein but is very minimal. I feel like she may be either still reacting to the rice cereal or to the milk protein so we are going to try a thickening agent called Simply Thick (which has no soy or milk protein) for 2 wks and if there is no improvement we will switch her to Neocate, an amino acid based formula. She has continuously had diarrhea that is very mucusy (sorry for the blunt description! lol!). Her drs don't seem to care so once again I'm having to do things on my own. We see a new pediatrician Aug 10th so we will see how that goes. I wanted to thank everyone who has been thinking of us and sending us good wishes!