Biopsy results

I spoke with the GI nurse today. They still do not have the pH probe results back yet, but they did have the biopsies. They showed some reflux damage, so he will be going on to a new medication, Nexium. This is the "healing purple pill" designed to treat and heal reflux. The doctor felt with the amount of time Cooper has been on prevacid, that there should not be reflux or damage. This is why the med change is necessary. On a brighter note, Cooper had NO eosinophils present in his esophagus, which means no EE! It also means he does not have any blood cells responding to an allergy of any food he is currently eating. That means my hard work to make my breastmilk incredibly pure has paid off. This is great news! All our current foods are SAFE! I am really glad to have the results, and that he will be on the best medicine for his current situation. I am also very glad that we did the EGD. This 100% confirms that it was a necessity and absolutely the right thing to do.

Cooper's lungs are clear, and he is finally back to his old self. His reflux is still quite flared up, and he is having lots of diarrhea, but other than that, he is doing good. Thanks again for all the thoughts and prayers.

Seriously!?!

Seriously. Cooper is off the antibiotic due to a possible allergic reaction. Not sure which antibiotic it is that bothered him though. He was given a dose of augmiten in the ER and then has had one dose of zithiromax at home because the insurance didn't cover the augmiten. Yesterday, I notice some small red bumps on his tummy. I remember thinking "hum, wonder what that is?" I thought it might be from the cold weather as my skin is awful this time of year. Then this morning, his chest and tummy is covered in little raised red bumps. It doesn't look terrible, but it doesn't look good either. Thing is, I can't remember when I noticed the bumps yesterday, if it was before or after giving him the dose of the zithiromax. So who knows which one is causing the reaction; it could be both. I called the ER where he was seen, and they said to dc the antibiotic and see the pedi tomorrow. Urg!
He seems to be feeling better. He is much more himself and is no longer running a fever. He is coughing a lot now and is wheezing some. But, that is a good thing I suppose; he is breaking that junk up. His reflux is really flared up. This is so frustrating. Why could he have not been doing that during the probe. I am really worried that it wasn't a very accurate account of his reflux because he was so sleepy. I'm sure it will be fine though. His meds should kick back in soon and he will be feeling better. Anyway, it has been a week!

Finally, an update

So sorry it has taken me so long to get an update posted. I tried several times throughout the day yesterday, but the internet kept knocking me off. Now, for a very lengthy update:
When we spoke to the anesthesiologist yesterday prior to Cooper's procedure, he told us he was not comfortable sending Cooper home after general anesthetic due to his pulmonary history.We were all happy to hear that they would be keeping him and monitoring his heart rate, respiration, and oxygen saturation all night. He was very upset before they took him back. He was so hungry; he had to go like 16 hours without nursing. They gave him an IV steroid before starting the procedure in order to reduce any inflammation and help keep his lungs as well as possible.

The procedure itself was pretty quick. The GI came in and spoke to us. He was very pleased at what he saw and said the medicine had been doing its job protecting the GI tract from damage. He saw no visible signs of an EGID (praise God), and we will have the biopsy results to confirm soon. We were refreshed on how to record his symptoms for the pH probe and expected to see Cooper soon. But, he really struggled to wake up. He was very groggy and unable to maintain his oxygen on his own. His stridor was also very bad, so they administered another steroid in his IV, and that improved. After about 3 hours, he was doing better and able to go to the step down, and we finally got to see him. He had a fever at that time, and has continued to have a low grade fever off and on since.

We got up to our room at about 5pm yesterday. Cooper was incredibly sleepy and slept most of the early evening. We tried to get him up to play around 8, and he did a little bit. But, he was certainly not himself. Around 9, thing got noisy. He was uncomfortable and unhappy. He cried/screamed off and on for most of the night. He finally slept for around 3 hours, so we all were able to get a little rest.

this morning the GI came in and said we could go home today. We tried our best to let Cooper have a few hours of normalcy in order to get the most accurate probe results possible, but he was no interested. He was still too sleepy. He had the probe pulled around 11 and we left around noon.

He is still running a temp, and is no at all the "Cooper" we know. He has not got his appetite back yet, and he is still extremely groggy and tired. He will only play for a few minuets and then just wants to lay in my lap. I talked to the GI nurse, and she said if he is running 102 or higher to call. If he is not a lot brighter tomorrow, I will take him to the pedi in the morning. For tonight, we will be lazy, and he will sleep with us tonight.

A quick post

We are about to head over to the hospital this morning. We are to be there at 10:30 and he is expected to go in at around noon. Last night and this morning have been a bit of a struggle. He had his last nursing at 12am and was able to have pedialite and apple juice until 8:30. He did ok with that and didn't even ask to nurse, but now that that is gone, he is upset and confused. He looks at me with the most pitiful face, like "why won't you let me nurse?" It is very hard, but I know it is for his best that he have nothing to eat after midnight. But he can't understand that, and he is hungry and wants comfort. I am also very uncomfortable. I forgot to bring the electric pump, so I had to spend $30 on a hand pump that wasn't worth that. I can't wait until he can nurse again. I will update asap after he is out.

We're off

We are about to leave for Cook's for Cooper's scope and probe. I don't have the time yet but should know later today. I will update ASAP tomorrow. Thanks everyone for the thoughts and prayers.

GI appointment continued

I have finally found a few moments to blog in greater detail about our appointment on Friday. The appointment went really well. Cooper weighed 18lbs 1oz and was 29 inches long. That put him IN the 5th% for weight, which makes me very happy. The doctor wanted us to cut Cooper's prevacid dose in half, down from 30mg a day to 15mg. He told me that this is the dose he (a very tall, grown man) would take. This is not the first time we have been told that. Bottom line is, we have to do something about that. I have tried many times before to cut the dose on my own, but it has been unsuccessful. This time, I am doing it, and will just cope with whatever the result. He's been on the new dose for 3 days now, and while I have noticed an increase in coughing /choking, he doesn't seem to be too uncomfortable. We also will have to take Cooper completely off meds 5 days before he has the EGD. This is going to be tough for sure. The doctor explained that he will have a major increase in acid regardless, because he has been on meds for so long, basically his whole life. So, even if the reflux itself is better, he will still have a noticeable difference. He gave us a new med called Carafate that lines the esophagus. He will be able to take this up until the day before the procedure. It will help with irritation and further damage. He also prescribed miralaxx to help with Cooper's constipation due to the incredibly strict diet.

The main reason they are performing the EGD is to check for damage to the esophogus and eosinophilic disease. We are simply looking for an explanation as to why he is still requiring such a high dose of medicine, and why he is so sensitive to foods. It could be that all of this will resolve with age, and that they find nothing. That is the hope, but it will be good to know for sure. Some of you may remember little Grayson had this same procedure a few months back. The reason for the pH probe is to determine if reflux and acid is still the main issue or if there is something else going on such as an EGID or some other food allergy. The hardest part of the pH probe will be the fact that it is left in for 24 hours and we will be discharged from the hospital with it. He will wear arm guards called "no nose" and is expected to go around as normal. HA! This was hard enough at 5 weeks old when staying IN the hospital, but at 11 months toddling around either a relatives home or a hotel, it may be a nightmare. Pray for my sanity!!!

The other thing we discussed was the fact that Cooper drinks all the time. He loves to have a bottle or a cup, and would drink juice/water all day long if I let him, on top of nursing. I always assumed that it was because his throat probably burned from the reflux. The doctor said that would be concerning if it wear true because on the high dose of med, again it should be under control. He also didn't like the fact that he was feeling his tummy with very few calories. He said that we should give him an amino acid based formula, elecare, instead. This was kind of hard for me to accept at first since I have done everything in my power to keep him on breastmilk and off formula. But I know this will be good for him and maybe those extra calories will help him chub up and get some reserve for the winter. He had his first bottle of it today, and it went really well.

All in all, I am very pleased with the appointment and the new clinic. I think we are finally in the right place, and it gives me such hope. I feel completely at peace with all of this. I am not too worried about the tests or the results. When the dr told me he would need these procedures and would have to be put under a general, I didn't freak. It is an amazing feeling to trust in the Lord. Thank you Jesus for making me feel at peace, knowing Cooper is in you hands!