I wish God would clean up puke!

Ok, so I did a ton of reflection and prayer last night, trying to feel more at peace again with our whole situation. Back in January, I came to the conclusion that I needed to hand everything over to God. With that decision came an overwhelming sense of peace and determination that we can do whatever we are dealt with, as long as we leave it to God.

After cleaning up red puke (thanks to W's special calorie juice) and cleaning up pee, I pretty much had hit the proverbial wall, I so did not feel that way. I am so tired of cleaning up vomit that it is not even funny. I have puked on more times in the last 7 months, than I had been my entire career of being a labor and delivery nurse (that is a ton of vomit).

At first last night, I just wished God had sent someone to clean up the vomit. After awhile, I realized he did...ME! I am feeling more at peace again this morning. I now realize, I just need to keep doing what we are doing and continue to have faith that God is handling the situation, all the way down to the vomit.

Frustration

So, W is doing well regarding his PEG tube. He doesn't like the site cleaned but I haven't given him anything for pain for 5 days. It was an uneventful week until Thursday. On Thursday, W's feeding therapist informed me that she is moving and will no longer be coming to see W starting September 1st. This is a huge bummer for us as we have been working with her since March. We will really miss her, we are fortunate to have an awesome Occupational therapist (OT) already on board. Our OT specializes in kids with feeding issues so she is going to focus on eating more and still try to work with some of his sensory issues, since a lot of the issues go hand in hand.

W has also decided the last two days to go on an eating strike, unlike most kids this means he has not put a single bite in his mouth for two days! I am about in tears, I really don't want him to totally regress

A new beginning

So, W had his surgery Monday to place his PEG tube. The surgery itself went well, it took less than 30 minutes, including doing biopsies with the scope. The recovery itself was a different story. I remember in nursing school being told that kids coming out of anesthesia can be pretty wild. He did pretty well last time and was just in a zone. This time it was a different story. He woke up and was thrashing and I could barely hold him. The nurses kept saying " you are going to drop him!" All I could think was "Yeah, I know." One nurse finally took him and showed me how to hold him in a safer way, closer to my chest and tummy to tummy, after I was told to not let him lie on his tummy. When we saw the surgeon for a consult, I asked if he was going to have a lot of pain, I was told "no, nothing a little Tylenol won't take care of". That was a total understatement. He was pretty painful and when I told the nurses what the surgeon told me, they smiled and said that the kids are usually painful. He got Demerol in the recovery room and continued to get Morphine through the night. He would just lay in the bed and either moan/cry or sleep. When we came home on Tuesday (with some Tylenol with Codeine for the little dude)he continued to lie around.

He finally started to pep up on Wednesday afternoon. Thursday afternoon he played with friends and did great, he was hurting when we got home and was guarding his tummy. He has had some greenish, snot consistency discharge around the tube insertion site along with some pink clear discharge, all which the nurse has said is normal as long as there is no odor to it or doesn't have a fever greater than 100.5 degrees. He is starting to drink well and is wanting to eat, so these are all good signs.

He still doesn't tolerate bolus feedings very well, so I always just hope he drinks his 16 ounces a day, so I don't have to bolus since he tends to throw them up (which to me is counterproductive).

He keeps pointing to his nose and saying tube. When we tell him it is gone and it is in his tummy now, he smiles. This in itself makes the decision for him to have surgery worth it, he almost acts like there is a weight taken off his shoulders. We are also teaching him that his PEG tube is his "button" and help him show friends so he doesn't feel like it is a bad thing. He is still sore and doesn't like me cleaning it, but it gets better every time.

The Verdict

Today we saw W's GI doctor and received the verdict on whether or not he needs to have the G-tube placed as scheduled on August 2nd. But first, an update on daily life. The last couple of days he has been eating!! I mean really eating, more than just a few bites a meal. I don't think it made a difference however, his weight today was down from his weight at the pediatrician's last week. Some of this can be attributed to different scales, but now he is no longer on the charts. Who knew 5 ounces could make such a difference :(.

So we are a go for the G-tube placement on August 2nd. His GI doctor really thinks he will have to have the feedings for a few months yet since he isn't (generally) really eating much, if at all. We have mixed emotions regarding having the G-tube placed, but try to remind ourselves to trust in God and that He has placed Wyatt in the right hands and helped the doctors to make the decisions for Wyatt's best interest.

We also have to try to get 35 ounces of fluid down him a day. Sixteen ounces will be easy because that is what he gets in his tube every night. The rest will be a challenge. I do know we will be doing a lot more gavaging during the day, but I guess that is just how it is. I also spent some time on the phone trying to explain to my 80 year old mother-in-law about the G-tube and to try to calm some of her fears and misconceptions from what other people have told her. I think she understands, I am going to make copies of some of the booklets to show her pictures, I think this will help her. Feeding therapy tomorrow.

Finally on the Growth chart

Yesterday, W had swim lessons. I don't get it, at home, he is a fish and does most everything without crying, at swim lessons, we can't even get him to play on the step without crying. We are doing swimming to help strengthen his upper body. He will hold his breath, which I think is good for a 20 month old. He cried hard enough, he threw up his feeding tube (which may have been partially my fault, since the tape needed reinforcing and I didn't have any with me).

Afterwards, he had an appointment with his pediatrician. He is starting to cry every time a doctor examines him. I am sure it is just because he is overwhelmed with seeing physicians, he doesn't mind if they are in the room, just when they are touching him. All are very gentle, I think he is just done! The best news, he is finally back on the growth chart, this is the first time since he fell off over a year ago!!!!!!!!! I know it is because of the calories he gets at night in his feeding tube. He is only at the 1% , but he is on it!! The pediatrician also suggested we discuss with our OT if physical therapy is needed. I will have my husband do this on Saturday as I will not be here for therapy on Saturday.

He had feeding therapy today. He took a couple of licks of frozen yogurt, but that was it. He was not impressed with it on his hands or with the muffin either. He generally just plays and giggles and doesn't eat. But, at least it is not stressful for him, which eating generally is. We did not replace his tube last night because we didn't get home until late from picking my husband up from the airport. He didn't eat more today, but he did drink well. He drank 12 ounces of his milk by noon, it usually takes him until 4 or 5pm to drink 8 ounces. It probably helped it was 117 degrees here today! It was nice for him to have a break from his tube, but we will replace it tonight and back to the same old. I dread putting his tube in.

Today, we had feeding therapy

Not just for recipes anymore- a way to keep up on W's progress

Ok, so I have decided to use this blog as a way to chart, vent, process W's medical "stuff". I will start at the beginning. Warning, it is a long one as the story begins back in October of 2008. I will try to fill in the important stuff without too much "filler".

W was born in October of 2008 by repeat Cesarean birth at 38 weeks, 2 days. W is the second child and youngest boy. From birth, he did not nurse well or even bottle well. He had a really weak suck and swallow. He weighed 8 lbs at birth, at 2 weeks of age he weighed 7lbs 2oz (when most kids are back to birth weight). He wasn't back to birth weight until he was almost 1 month old. He also would cough a lot and act like he was spitting up, but then swallow it. Evenings were also MISERABLE with him. He was very fussy and at times inconsolable. I kept telling the pediatrician the symptoms and was told that was a normal child. At 6 weeks of age, I saw a different pediatrician in the office, due to scheduling difficulties. This new pediatrician diagnosed W with reflux, at 2 months of age, he started taking Zantac. I then chose to stay with the "new" pediatrician. The Zantac was initially like a miracle. After the first dose, I had a whole different child, no fussiness and very pleasant, for the first time, I might add. The Zantac worked for about a week. The next week, we started on Previcid, which he is still on.

We continued to have problems with weight gain. He continued to very, very slowly gain weight. He fell off the growth chart at 6 months of age. At 9 months of age, we switched to Soy based formula and were referred to a GI specialist. The GI specialist diagnosed him as Failure to Thrive (organic based). Just a note, he is NOT Failure to Thrive because I am a bad mother, it is because of his reflux and milk allergy and we will find out later he was also aspirating (swallowing fluid into his lungs).

At 15 months the decision was made for W to have an upper GI scope (to check out his stomach and tubes leading to his tummy for normal anatomy and to check for allergy cells. This was to help rule out Celiac disease (gluten allergy). All looked good and no Gluten allergy (YEAH!!). It was also decided that we would start Nastrogastric (tube in nose that goes to stomach) feedings. The doctor said that on average kids with a similar situation as W's have the tube for 3-6 months and start eating the calories they need. We have to change his tube every week or when he throws it up.

We are now close to the 6 month mark and he is gaining weight, but he is not eating well at all. A good meal for him is 5-10 bites a meal. He also has a ton of sensory issues. He sees both an OT and a feeding therapist weekly. We technically have made very little progress. He is scheduled to have a Mickey button (surgically inserted into his abdomen-easily reversed) inserted on August 2nd. We see his GI in a week and he will make the ultimate decision if he needs to have the Mickey button. I will keep you all updated.

Garlic bread

Very easy! Warning: NOT healthy, but tasty!

Oven 375 degrees. You can vary the temperature based on what you are cooking, just alter the time.

1 loaf store bought French Bread

1 stick butter (at room temperature)

3-4 Tblsp garlic (based on taste)

Cut bread in half lengthwise (so you have a top and bottom)

Mix butter and garlic in bowl. Put half of butter on each side of bread. Put bread back together, wrap in aluminum foil. Bake for 20 minutes or until butter is melted and bread is hot throughout.