Peg Tube Surgery

We went in early Monday for his surgery and Ethan was released around 8:30 last nite. We were very happy to come home. Overall, the surgery and recovery went well, but Ethan has developed a huge anxiety problem. The stay in the hospital was a little rough. Basically, every nurse or doctor who enters the room makes Ethan tense up and shut down. He is so afraid of everything they do.

It didn't help that immediately following surgery, about two hours post, they postponed giving him pain meds once he was transferred to the Pediatrics Ward. This was due to some resident not entering the orders when they were given but waiting several hours to do so. Meanwhile, Ethan was crying and in severe pain for about two hours till the pain meds were finally administered. Needless to say, I was extremely unhappy and from that point on Ethan was a bit untrusting.

However, after that incident the care improved. Unfortunately, I think Ethan is just traumatized by everything that has happened that last six months and he really hates to be in the hospital.

This morning PT & ST have already come by. Although he is definitely taking it easy, due to the surgery, he is doing well. He has had low grade fevers in the afternoon and at night but nothing to be concerned about. Last nite, Daddy went out and bought a new game for his DS and the new dragon movie. We felt he deserved a reward for what he's been through. (The surgery/procedure was a little more serious than even I thought.) Brynn got a new little automated puppy too for tolerating only Ryan and Uncle Cole the last couple days (teehee).

Thankfully, Ethan gets a break from the hospital until next Thursday! YAY!!! Plus, it's awesome to see his little face without a tube running through his nose. We are still seeing slight improvements in his facial muscles. I think (hope) I see a little improvement on the right too. Pray that side begins to wake up.

We will update you if anything changes with Ethan's recovery, but I think he's doing really well now. Unfortunately, Brynn seems to be a little sick. We will see how that develops and hopefully doesn't effect Ethan.

Thank you to everyone for your positive thoughts, prayers, and energy. We really enjoy and appreciate all the support we have been given by all of you.

Love,

Nic

Ear Surgery

Ethan's ear surgery went well. Although we arrived at the hospital at 5:30 am, it did not start till 8 am. Then, it only took about ten minutes! It seemed like they were rolling him back to me before I could get through one page in my book. It went really well and Ethan does not seem to be in any pain. Initially, when he woke up from anesthesia, he was crying saying his ear hurt but the nurse repositioned his head and then he was just fine.

We came home, hung out a bit, and then both of us crashed out on the couch. Brynn managed to entertain herself through our two-hour crash by watching Imagination Movers and Mickey Mouse Club. Although, I remember receiving multiple kisses and apparently I was playing dress up with her as she had her butterfly wings on me and all her princess jewelry out over me. She has really been a trooper through all this. I feel like she definitely has had an altered two-year old life with Ethan getting sooo much constant care, but I think she is handling it pretty well.

We are looking forward to the weekend - no appointments - but we will soon be back for the g-tube insertion. However, we gain quite a bit by getting rid of that ng tube.

Have a great weekend. Love you all!

Check Up & Transfusion

Back from the hospital and both kids are snoozing on the couch. Ethan got a blood transfusion and all is well. Tomorrow, we are to report to the hospital at 5:45 am for his right ear tubing. Pray all goes well.

Then, on Monday, he'll report at 7am for his g-tube insertion and will need to stay overnight for that as it's slightly more invasive. He has been a little anxious today and I'm sure it's from all this surgery talk and preparation. I can't wait till mid-week next week when all this is behind us and he is feeling a bit better. Plus, he won't have a silly ng tube!!! He is really looking forward to that too.

Update you soon.

-Nic

Ethan got a fever Sunday night and it got up to 38.2. The cut off for taking him to the ER is 38.3. I called the doc and explained he had a temp and that his right ear was bothering him. I explained that Ethan and his sister were roughhousing and Ethan's ng tube was pulled out. I had to re-tube him. We think this irritated things and some formula got up in those passages when it was pulled out. The doctor thought so too and told us to give him Tylenol , watch his fever, and bring him in the next day to the clinic to avoid the ER if possible.

When we went in yesterday morning Ethan was already feeling much better and didn't have a fever. He was prescribed antibiotics for his ear, got his blood counts, and we were sent home! What a relief, the old hospital would have had us come into the ER on Sunday and kept us for a week! Different philosophies about care we think. I like this one much better.

Ethan would have started antibiotics after the tubes were inserted on Friday anyway, so now we are just starting them a little early. He is doing well today and had his OT appointment this am.

On Thursday, when he goes in for his regularly scheduled appointment they will already have his blood transfusion ready for him since they typed him yesterday. No more eight hour days at the hospital for a two-hour blood transfusion! YAY!!!

I am really liking the Army Hospital.

I'll update you again on Thursday or Friday after his first surgery.

Have a good week!

Ethan went in yesterday for his last vincristine dose for this round of chemo. His counts were surprisingly high. He didn't need blood or platelets! His hemoglobin was getting very low, but he'll just get a blood transfusion when he goes in next week.

He has been having multiple therapies all week and seems to really enjoy them. Right now, we are waiting for his second official speech visit since moving to TX. Hopefully, he enjoys speech as much as physical and occupational therapy.

We also went to our pre-op appointments for the G-tube insertion and right ear tube insertion this morning. We are all set to go for the 22nd & 25th of October. They decided to split the procedures up. As long as his counts are decent next week, they will go ahead with both surgeries. The second surgery, for the g-tube, will require at least a one-night stay at the hospital, but Ethan should be feeling much better just in time for Halloween.

He has been a little nauseous but holding mostly everything down. He continues to eat a little by mouth every day, but is still not able to swallow liquids very well.

Have a great weekend!

Love, Nic

Ethan did really well with his second chemo round while he was in the hospital. Since we've been home he has been nauseous and a little more tired, but doing good otherwise. Just today, he only puked once so hopefully the nausea is subsiding. He had a dose of vincristine on Thursday and will have another one next week. Then, he'll have a 3 wk break, which he will need. He may need platelets or a blood transfusion next Thursday as his counts will probably go down for the next week or so.

The doctors are still planning to drain his ear on the 22nd of this month and now they might also insert a g-tube. We have been using ng tubes for so long that it seems logical to have a g-tube now. This is basically a hole in his abdomen that we can open and close and feed him formula through versus the current tube that runs through his nose and down his throat to his stomach. We think eating will become easier for him without a tube constantly shoved down his throat. Plus, we won't have to re-tube him monthly. Ethan HATES when he has to be re-tubed. He says it is worse than being poked in his port and you should see him before that happens!

He has been having steady physical and occupational therapy visits which he enjoys very much. Speech therapy has not yet started. Hopefully that will happen soon as well. He did have a speech evaluation on Thursday. It seemed more like an IQ test rather than a speech eval, but comprehension is closely related to speech. Luckily, Ethan has not lost any comprehension and didn't have a problem with the eval. He really just needs to work on the physical aspects of speech. He still has a lot of facial weakness. He is getting closer and closer to closing his lips all the way, but not quite there yet. I see more and more twiching on the left side and nothing on the right yet.

Uncle Cole found an apartment down the road from us which is awesome for the convenience and emergency factors. He'll probably be spending a lot of time with Brynn while Ethan receives his various therapies. We are really happy to have him here.

Ryan is adjusting to the new job/school. His coursework will be intense the next couple months, but after that it should get a little easier.

The kids and I are settling in nicely to the area. Still enjoying the cooler weather and greener scenery. The mosquitos are tearing Brynn and me up though! For some reason, they don't bother the guys.

Well, have a nice weekend. I'll try to fill you in after Ethan's chemo visit next Thursday.

-Nikki