Dr. Pearson called yesterday morning with Nylas CT scan results. He said ALL her sinuses were infected bad. Her left side is worse than the right, but they are all really bad. She most definitely has chronic sinusitis which he said is quite rare in a child her age. He started her on a twice a day for 3 weeks course of Augmentin. If she gets better and stays better than we dont need to see him again, until/if it comes back. If it comes right back after we stop the antibiotics we have to come back right away.

He didnt get the actual scans, just a copy of the radiologists report, so he said he doesnt know why she has this. It could be an anatomical deformity causing a blockage or something else, but he wont know until he sees the actual scans. As of now he isnt making plans to take her tonsils and adenoids out, unless when he sees the scans it shows that they are enlarged or infected. This is great news, I didnt want to have her go through another surgery if we didnt have to.

Nyla has finally gained a little weight, she is up by 0.3 pounds from when she had her dental surgery on the 15th of March. More good news!!

Today was Nylas ENT appointment. He wants her to have a CT scan of her sinuses before taking her tonsils and adenoids out. Her CT scan is scheduled for Friday morning at 8:30 am; now lets just hope she holds still so she doesnt have to be sedated!!

Nyla had a lung x-ray when she seen the pulmonologist in January, and it came back normal. The ENT said that since her x-ray was normal he doesnt think she has CF or PCD, but if removing her tonsils and adenoids doesnt help, then we will look more into those 2 issues. She hadnt gained anything since we were there last. He is optimistic that this surgery will help with her growth, and I really hope he is right. She is so tiny.

So, for now we wait for the CT scan and results and he will schedule her surgery from there. Hopefully this will be the END of her issues.

Nylas episodes of 'mom I cant breathe' are coming more frequent and I have no idea why. She HATES nebulizer treatments, so when she comes and asks me for one I know she is uncomfortable. We are diligent about her preventative care but I feel terrible when she has these episodes. The breathing treatments work well so far; we havent had to take her to the hospital since January, so Im thankful for that.

Things are getting a bit better. Nyla is back down to her 'green zone' treatment, and her peak flows have been around 80% which is great. Last night just before midnight she came to me and told me she couldn't breathe and asked for a breathing treatment, so we did a nebulizer treatment which helped and she went right back to sleep. I hope it was just a one time thing for now, but I haven't checked her peak flows yet today. Her ENT appointment is on Tuesday and I'm really looking forward to getting this next surgery underway because I'm optimistic that this will be the answer to her chronic sinusitis and failure to thrive issues. One can hope anyway right??

Well, I now know its not the anesthesia making Nyla cough. She is coughing bad now, and it has been 8 days since her surgery. She is back up to 220 mgc FloVent twice a day instead of 110 mcg twice a day. Hopefully we can avoid another trip to the hospital and/or another round of Prednisone this time. Her sinusitis is back in full force too. Her nose is so bad, bleeding and all. I wish this all would just END. She has lost 3/4 pound since her surgery 8 days ago, and I have no idea why. We are pretty used to this pattern by now, but it doesnt make it any easier. We try so hard to get her to grow, and nothing is helping.

Her ENT appointment is on the 6th of April and he will decide then if he is going to take her tonsils and adenoids out and if he needs to do a lung biopsy to test for PCD. Other than this, Nyla is doing really well. She is eating OK and doing very very well in school. I got her registered for kindergarten yesterday. I really cant believe she is that old already!! Sending her to kindergarten worries me with her poor immune system. She is going to be sick non-stop if we cant get a handle on this soon.

Tomorrow Nyla gets to go to the fire station for her preschool field trip. She doesnt want to go because she is scared, but I think once she is there she will have fun.

Nyla is still doing pretty good pain wise. She hasn't needed any pain medicine since yesterday afternoon. She is coughing and wheezing today, it seems to be getting worse, but the anesthesiologist told us that this may happen. I don't know if it is from the surgery or if she is getting another sickness, or just an asthma flair up though. Time will tell I guess. If she is still like this tomorrow it will be time to up the FloVent before it gets really bad.

Brandon was up all night puking and has been puking and had diarrhea all day today. I know he will get over it in a day or two, but Im really hoping Nyla doesnt get it. She just cant fight off these things like she should be able to. Its so frustrating!!

Primary Childrens Hospital called yesterday to see how Nyla was doing. They just wanted to make sure everything was going well, which was nice!!

I want to give her a few weeks break before going back to the ENT to get the tonsil and adenoid surgery under way, but after just 3 days off antibiotics her sinusitis is already coming back.

While up at Primary Children s on Monday, the anesthesiologist was talking to us about the 5 previous attempts at getting Nylas dental surgery done. We explained why it had been canceled so many times, and she told us that with Nylas history we should not let Sevier Valley Hospital do any surgical procedures on her. Its not that they are a 'bad' hospital or anything like that, its just that they are not equipped to deal with kids who are high risk like Nyla. They dont deal with kids very often, and they dont have the experience with high risk kids to do surgery safely. After hearing this, I was actually happy that Nylas surgery had been canceled 5 times causing us to have to go to Primary Childrens.

The surgery is done!! I cant even begin to tell you how relieved I am!!

We didnt get to bed until 11:30, then had to get up at 3:30 am and were on the freeway by 4:00 am. Nyla slept the whole way up which made the trip easier for sure! She had her physical, and passed thankfully!! She was 14.0 Kilos and 41.5 inches tall. Lungs, ears, and sinuses were all clear. They gave her a medicine that made her very loopy and then took her back in a little wagon. No tears at all, it was nice. The anesthesiologist visited with us before hand and told us that with asthmatics, they expect an asthma attack when they intubate, so she gave her a double dose of steroids and a breathing treatment before intubating her to help ward off the attack; which worked! She didnt have any issues with her lungs during the surgery!!

The dentist did 5 crowns and filled 4 cavities. He also said he scraped of some stuff that was on a few of her other teeth that would cause cavities. It wasnt plaque, but I cant remember what he called it.

Once she was breathing on her own they came and got me to be with her while she woke. Her nose was bleeding from the breathing tube and her oxygen kept dipping into the 80s but other than that she was doing perfect. She woke up slowly and realized that there was an IV in her foot, and she was NOT happy about it. She wanted it out so bad. Once she woke up her oxygen stayed up and we were discharged.

We left the hospital feeling like a huge weight had been lifted!! I am so so soooo glad that is over. due to the anesthetic, she slept most of the way home.

So far she hasnt had much pain. Only a few times she has told me they hurt and I give her Mortin and she is fine. She did wake crying several times last night and she was very congested. I dont know if its a side effect from something to do with the surgery or if she is getting sick again now that she is off antibiotics.

She is doing well this morning :)

Here are some pictures:

In the Pre-Op room:



Still sleeping:



Her poor foot she was so upset about:


Trying hard to wake:

The hospital called yesterday to go over Nylas surgery stuff. We have to be at Primary Childrens by 7 in the morning; which means we need to leave here between 3:30 and 4:00 in the morning. We had to go over everything Nyla has gone through from what happened to her in utero to her NICU stay, hospital visits and so on. They had to know all the meds she has been on in the last 30 days which consists of Ventolin/inhaler, FloVent/inhaler, Albuterol/nebulizer, Singulair, Prevacid, Veramyst, Zithromax, Ceflacor, Prednisone, and possible a few others I cant think of right now. She has to take her FloVent and Prevacid before 5:45 am and then nothing at all after that. Her pre-op physical is at 7:15 am at Primary Childrens, then her surgery will begin at about 8:45 am.

Im getting nervous about the anesthetic, but Im hopeful that she will do just fine. Its going to be a long day for all of us.