Sunday, November 29, 2009

Need some feeding advice

I am beyond frustrated in the area of Randy's feeding. Let me preface my complaining (I mean concerns) with the fact that he is getting a decent amount of calories and he is growing and gaining weight. Right now he is 31 inches long and weighs 22 lbs. This puts him in the 1oth percentile for length, but still not on the chart for weight (he's getting awfully close though). Randy needs about 1,000 calories per day. He usually hits this mark through a little planning on my part. He gets two bowls of baby oatmeal that I calorie pack with his formula and prunes; this is 300 calories. He drinks 10-15 ounces of formula per day which is 300-400 calories. He eats one container of YoSoy yogurt which is 100 calories. That only leaves about 200-300 calories left which he gets in the form of baby food, crackers, dry cheerios, chicken nugget, or a sample of some pureed table food I may be able to coerce him into eating.

So what's the problem? Well my son is 20 month (OK, 17 months adjusted) and all of those foods look like they belong to a 9-10 month old. His veggies and fruit are 100% baby food. Chicken nuggets are the only meat he will eat (and MAYBE popcorn shrimp). They have to be certain chicken nuggets too; the outside must be crispy. Fortunately he gets some protein through his formula and he looooves the YoSoy yogurt. He could do a commercial. Once I left it in his bag at my mom's when I left him there and he was digging in his bag and found it. My mom said that he picked it up and held it out and started kicking his feet in excitement.

But I digress..... Another thing that bothers me is that his eating is regressing instead of progressing. In early July he had a list of foods that he would eat such as: hot dogs, sausage, green beans, baked beans, black beans, baked fish, avocado, mashed (with a fork) regular and sweet potato, and steamed carrots. Today he will not touch any of those foods.

He is in feeding therapy. He started in April and had it weekly until June. Then he moved to every two weeks, then as needed (about once a month). I noticed that he was slowly dropping foods. It started around the time he started daycare and began that dreaded cold/virus thing that took up residence. His OT attributed it to him being sick and said to just continue to offer foods and use his NUK brush. He started resisting the NUK brush and dropping foods. In late September/early October the OT began seeing him weekly again. She said that he was retracting his tongue again and his oral skills had declined. BTW, did you know that the ability to eat has nothing to do with the number of teeth you have? Randy has almost a full set and does not eat well.

But I digress again.... He has missed three weeks of feeding therapy since his surgery. He goes back to daycare this week and will resume his therapies (he has gained some other skill since being out of therapy but I will save that for another post). I am going to beg her to give me some more techniques. What I am doing is obviously not working. And the worst part is that he seems so depressed when I am feeding him (unless it's yogurt). He puts his thumb in his mouth (he does not suck his thumb), he leans his head to the side, his eyes gets glassy, and he cries. I am usually the only one who gets this behavior because if he is at the sitters or my mom's or with a friend, I try to give them food he loves. I feel like they should not have to deal with that and I don't want to make him more difficult to babysit than he already is. My hubby and daughter usually pick something easy too when they feed him. I am usually the one trying to get him to eat mashed table foods or a thicker puree.

I am at a loss. I need suggestions beyond "he'll eat when he gets hungry". Any ideas?

Friday, November 27, 2009

My Son is Back!!!

And he has been back for about a week. For three weeks prior to his surgery and two weeks post surgery, Randy was waking 1-3 times throughout the night. And he woke up screaming. A loud wail that sounded as if someone was chasing him. Some nights it would take a bottle to get him back to sleep. Some nights it took Tylenol. Some nights it took rocking.

I was beyond miserable. I was snappy and work and at home. We were not even enjoying our evenings because I was exhausted (while he recuperated at the sitters). I'm not sure what the trick was. I asked the sitter not to let him nap before 11 am. I also began giving him a bowl of cereal before bed. I'm just glad to have my son back.

Friday, November 6, 2009

Free to go!!!!

Well almost. We have the word, just waiting on paperwork.

Thursday, November 5, 2009

It Never Gets Easy

Randy's shunt revision went well. His follow up CT scan looked good and they are just observing him and giving antibiotics to prevent infection. If all goes well, we'll be heading home tomorrow or Saturday.

Despite having gone through this with him almost a dozen times, it never gets easy. I know what to expect, but it does not get easier. In fact, the two revisions this year have been more difficult than the 8-10 last year. I think that we had time for the dust to settle and got a taste of "normalcy" where as last year the surgeries were back to back to back; there was never anytime to let your guard down so I got used to operating in the "crisis mode".
It never gets easier to hold him down while they stick him over and over to try and draw blood. I took Randy to one of the satellite locations to get him blood drawn Tuesday evening. This location is about 30 minutes away, whereas the main location is more like 50 minutes away. We went at about 7:00p after work, therapy, and dinner. They were sooo kind and it was virtually empty. I warned the phlebotomist that he was a hard stick. She took her time to find a vein, and then got a colleague to help. She got blood on the first stick!!!! Then the vein blew. The amount of blood she drew was not enough to run any test. The guy helping her went to the other arm. He looked for a while and tried a vein; no blood! She then went to the ER department to get a nurse so that they could give his feet a try (the phlebotomist are not allowed to stick in the feet). Two nurses came. They searched and searched and gave it a try; no blood. Meanwhile, Randy is screaming and crying and babbling and looking at me with pleading eyes. They sent us away with a note telling the main hospital that they could not get the blood and to draw it in the operating room. Does it ever get easy?
We arrived at the main hospital at 9:00a for surgery that was "tentatively" scheduled for 11:00a. Randy was basically considered an "add-on" because the OR schedules fills up rather quickly. They do save a few spots for emergencies though. He was not allowed to have anything to eat or drink after 3:00a. So mommy set her alarm for 2:30a to feed him. I gave him bowl of oatmeal, which he devoured, and a bottle, which he refused. He then proceeded to talk and play in his parents bed until 5:00a. Lucky for us, he played by himself. We dozed and at 6:00a it was time to get up. I had to give him a full bath in baby shampoo and put him in clean garments. He was sleepy; I was sleepy. Does it ever get easy?
So we are waiting patiently in the pre-op area. He wants to play on the floor; that grosses me out. The nurses ask a million questions that I have already answered a million times. They were nice though. They got toys for Randy and a blanket for the floor so he could play. He was really good as 11:00a came and went, 12:00 came and went, and 1:00p came and went. At 1:00p he finally passed out only to be awakened at 1:15p to go to surgery. He was a big brave boy as we kissed him goodbye to be taken to the operating room. Does it ever get easy?

Pre-op with Grammy

And then you wait. You eat because you are not sure when you will have the chance to do so again. You use the restroom. You update family and friends. But mostly you wait. You wait in this room with TV's that no one is really watching; with magazines that no one is really reading. Does it ever get easy?

You talk to the doctor and he tells you all went well. He tells you that he will monitor your baby and you thank him. You wait to go to recovery to find a groggy, whiny baby. He is loopy from the anesthesia, but is also cranky from it. Sometimes he is nauseous or crying. You hold and soothe and try to get him to drink so that you can move to your room. Does it ever get easy?

Post-op; recovery

Remember those questions you answered in pre-op; well you answer them again when you get to the room. There a luxurious looking pull out chair for you with sheets. The PCA's and nurses check out your child and ask you if you need anything (how about waking me up because I hope I'm dreaming). Then they leave and say "get some rest". And every hour someone is leaving and repeating "get some rest". Does it ever get easy?

I know for me it has not gotten easy. But I do thank all the doctors, nurses, child life specialists, PCA's, interns, phlebotomist, x-ray technicians, transport persons, cafeteria workers, and other parents who certainly make it bearable.

Day after surgery. "Look at my bald head!"

Monday, November 2, 2009

Surgery is scheduled

Shunt revision is Wednesday. The nurse from neurosurgery called this morning and said the doctor wanted to do surgery. She asked if he had a fever, cough, runny nose, etc... I told her he had a slight cough and some congestion. She told me he needed to get in and see his pediatrician to be cleared for anesthesia; TODAY. He also needs to get lab work done. When I took him two and half weeks ago, the neurosurgeon talked about admitting him a day early and giving IV antibiotics an infection precaution. The nurse is going to call me back with more details and a surgery time.

Today: Doctor at 3p
Tomorrow: Lab work
Wednesday: Surgery

He watched the area for so long, now everything is moving so fast....