Tuesday, January 26, 2010

Follow Up

This morning brought Jimmie waking up with his g-tube site crusty and Rachael very frustrated that she didn't know how to clean it, if she should turn it, if there were stitches needing to come out etc... So she called the surgeon's office again and the nurse and Jimmie's surgeon agreed with Rachael and were fairly frustrated that nobody had gone over all of this with Rachael during Jimmie's post-op care at the hospital. Sure enough there were a couple of stitches in that were due to come out. Surgeon S. worked Jimmie in this afternoon which was awesome.

The visit went well. Jimmie's g-tube site looks great. Rachael was finally taught how to clean it, turn it and what to do if it came out. She was given extra supplies and all of her questions were answered! Yeeeah! (-:

Hopefully now Rachael and Justin can confidently move forward from here . . .

We are thankful for your prayers and support!


Monday, January 25, 2010

Shock Therapy- Say What?? (-:

Jimmie's g-tube site is definitely looking better today. Rachael said he still seems to be recovering emotionally though. He is very clingy and having some separation anxiety. The last couple of nights he has awakened crying at least once and Rachael has rocked him back to sleep. She's just being as patient and doting as possible, trying to comfort him and help him feel secure again.

Something pretty funny happened this morning. Jimmie was sitting on the floor playing with her breast pump. He had the tubing and he put it in his mouth and made a really funny face and pulled it out. He did it again and then again with a super funny face and a shake of his head. He seemed very curious and confused. Rachael walked over there and took it from him and tried to figure out why he was reacting so funny to it. She put the end of it in her mouth and it SHOCKED her. She said it felt like when you put your tongue on the end of a 9 volt battery. LOL! So Jimmie was shocking himself every time he put it in his mouth and Rachael said he was clearly undecided on if he liked that feeling or not. Talk about Sensory Integration. Forget the oral brush, we'll call it "shock therapy" right? LOL!

Say what?? Um no . . . Jimmie will not be allowed to mess with the breast pump anymore.


Saturday, January 23, 2010

Antibitiocs Started

Jimmie's doing well. Yesterday the site of his g-tube became noticeably red. So Rachael pursued the antibiotic question further. She was able to get a hold of Jimmie's surgeon through a nurse. He verified that yes indeed he did feel Jimmie should have been put on a round of antibiotics. So he ordered a prescription in and Rachael gave Jimmie his first dose last night. As of this morning Rachael thought maybe it looked a little less red. Please pray that he heals and that there would be no infection. Why the antibiotic thing did not get communicated and done while Jimmie was in recovery at the hospital-?? We don't know. Rachael did ask about it quite a few times. Actually they never saw a doctor after his surgery. The whole time they were there (post surgery) no Doctor or NP ever came in to look at Jimmie. Jimmie's surgeon also told Rachael through a nurse last night on the phone that Jimmie should be looked at in a couple of weeks. Nobody told her that either. As you might imagine Rachael and Justin are a little frustrated because of the lack of communication surrounding this whole thing.

Almost every bit of important information surrounding Jimmie's g-tube has had to be actively pursued by Rachael and Justin. We are a little dumbfounded about this. When Jimmie was there for his Endoscopy and P.H. Study this was not the case. They saw many Doctors and NP's and everything was managed thoroughly.

Oh- well, just keep praying for Rachael and Justin as Jimmie's advocates. They are doing a phenomenal job!

Jimmie slept all night long in his own bed last night! Rachael was encouraged about that. She has also been encouraged by the lack of puking. Jimmie has coughed an gagged a few times, in a way that almost *always* led to a gusher, but- surprise- no puke. Rachael thinks perhaps it's because the NG is no longer running down the back of his throat exacerbating the gagging...

Rachael and Jimmie got to have a smoothie with some fruit yesterday for the first time in months. Rachael has been on this massive diet for Jimmie's food allergies and for a build up of yeast (candida) in her blood. Consequently she has lost a crazy amount of weight. I don't know the exact amount, but I think at least 20 pounds. She emailed her Naturopath who is managing this part of her and Jimmie's health care to let her know the extent of her weight loss and the Naturopath is fairly horrified. She is starting Rachael on protein smoothies with olive oil and fruit. The duration of the diet is supposed to be over in a couple of weeks anyway. She will help Rachael slowly start adding foods back in and hopefully get Rachael back up to an acceptable weight. Jimmie's weight gain has remained steady so that's great. Now we just need to see his momma put "on" some pounds too. (-:

Rachael and Jimmie *really* enjoyed that smoothie! Jimmie ate it by mouth with his momma.

As always- thank you for your prayers!


Thursday, January 21, 2010

Home This Evening

*edited to add pictures at the bottom*

Jimmie has had a much better day today. He has not needed any pain medication and this afternoon he tolerated 100 mls through his g-tube. He also was allowed to eat his solids again and boy was he excited about that! Rachael said he ate A LOT! She makes his baby food so she had made meals for herself and Jimmie ahead of time and packed it up for the hospital stay.

Jimmie has wanted to move around more today. He knocked a connection loose from his i.v. while Rod was holding him and blood started spurting! Aaaaaaa . . . That would have freaked me out, but Rod calmly got it under control and they called a nurse in who just ended up removing the whole thing. Jimmie was happy about that. That was his whole plan of course. (-;

Last night was rough. Jimmie is so much older and aware this time and he is clearly very anxious in the hospital. He is a very secure child when it comes to sleeping by himself in his own bed at home, at grandparents and even at my house. Last night though he was not having it! Rachael tried and tried to get him to sleep in the crib the hospital provided and he would just cry and cry. She held him for 4 hours and then Justin tried, gave up and held him for the next 4 hours. Poor little Jimmie Jim Jim.

So the good news is they were discharged this evening to go home!

Unfortunately there was a lot of "un-communication" as in "NO" communication- from the medical staff today regarding at home care. I'm not sure there is an organized protocol for healthy kids like Jimmie getting *only* a g-tube surgery. He was in a tiny little room in some sort of "follow up- or special care" unit that the doctors and NP's do not obviously place high on their priority list. There were lots of big questions Rachael never got answers to. Like how much should our end goal be in his feed amount and a plan for moving his mls upwards.?? Why Jimmie never received any antibiotics when his surgeon insisted he be on them because it was a surgery involving his "gut".?? Whether or not he did indeed receive stitches (that will need to be removed) in his belly button.?? What to do if his g-tube button comes out.?? Rachael ended up tracking down answers and tools for that last one before they left . . .

Anyway-- we have found Children's to be amazing and incredible in the skill with which they perform procedures on our children (my daughter has had 2 surgical procedures there). But lacking a bit in the organization and communication surrounding these procedures.

It's always easy to criticize though isn't it..? We all remain extremely grateful for Children's and everything they do for the kids here in our city and in the midwest.

So anyway, Rachael is feeling overwhelmed with his wound care and just the changes in the logistics of feeding Jimmie tonight. She knows in her head she'll get used to it. She knows he'll heal and it will be ok, but tonight it "feels" overwhelming regardless. If you know Rachael and many of you do "in real life" and others who have never met her may have an idea- she loves things to be "just so". Loose ends and unanswered questions are a challange for her to live with. Pray for her to relax and have as much peace as possible while remaining vilgilant (as she always is) with Jimmie's care.

Most important- Jimmie is doing great! Praise God!!!

Thank you for praying this through.

Here are some more pictures from Jimmie's time in the hospital . . .


Wednesday, January 20, 2010

Unhappy Boy

It's been hard today to see and hear about our normally happy energetic boy, obviously in pain and very upset about this.

Rachael texted me these pictures...

Rachael says Jimmie is obviously uncomfortable. He is on pain medicine as often as Rachael feels he needs it. Shortly after the surgery, while Jimmie was in recovery, a nurse pulled some tape off of Jimmie and removed an I.V. Jimmie became VERY upset and his oxygen sats dropped to 88 and 89. They kept the oxygen right next to him, and delayed taking him out of recovery to Rachael. They never ended up having to supplement his oxygen, but it was upsetting to hear about how hysterical he was. Grandpa and Grandma (Rod and Kathy) and Ma and Pa (Jay and Andrea) were all at the hospital this morning with Rachael and Justin. Both Grandpa and Pa tried everything that normally makes Jimmie smile and he refused. Pa said it was pretty sad.

Rachael fought a battle this evening. They (doctor) wanted Jimmie's first two feeds to be pedialyte. Rachael has been on this massive diet for Jimmie's food allergies that includes NO sugar AT ALL. The 2nd ingredient in Pedialyte is sugar . . . Rachael insisted that they just give him her breast milk. She knows he tolerates that. It took almost an hour of back and forth, logistics, but Rachael won, as usual! (-: So far Jimmie has tolerated his first two feeds. The amount is greatly reduced right now. They are working him up slowly.

Before the surgery Jimmie was satting 98, 99 . . . earlier this afternoon he was a bit lower than that at 95, 96 . . . The medical staff feels that is to be expected.

Keep praying that Jimmie heals quickly, that his pain would lessen and that he'll continue to tolerate his feeds. Also keep praying for Justin and Rachael as his advocates. Rachael is a pro at this, but could still use your prayers for wisdom, strength and peace.

Thank you for being Jimmie's warriors!


In Recovery!

Just got a text from Rachael saying, "It went well, he is in recovery. We have not seen him yet- though."

Thank you Lord! Now bless his recovery. I'll update tonight with how the rest of the day has gone.

Thank you for your prayers!


Tuesday, January 19, 2010

G-Tube Surgery Tomorrow

I don't have any pictures of Jimmie at the wedding in my possession yet, but as soon as I do I'll post them. He was as cute as a button! (-:

We are NOT looking forward to tomorrow in the sense that Jimmie will have his first official surgery. We are however grateful for how the g-tube is going to improve Jimmie's quality of life. He is a very happy healthy boy except for his inability to take in enough liquids. The NG tube is not comfortable and it usually has to come out and go back in once a week or so and that is always very painful and traumatic for Jimmie and everybody involved.

Jimmie had his pre-op appointment on Friday. He was running a low-grade fever, but has no other symptoms. Rachael can feel that he is working on cutting his first tooth. The anesthesiologist asked Rachael to give him a run down of all of the surgeries Jimmie's had, being a 24 weeker and all . . . When Rachael said, "None, he has not had any." He could hardly believe it. He questioned her, "Jimmie didn't have a PDA? Nope. ROP? Nope. NEC? No. No PVL or brainbleeds? No. A hernia surgery? No... Rachael said he was incredulous. He shook his head and said, "I have been doing this for 25 years and I have never heard of this in my entire time working here."

That makes us smile, A LOT. We never never take Jimmie's life and the miracles surrounding his journey for granted.

This surgery should be minor. It's expected to last about 30 minutes. They are suppose to check in at 8:30am.

Please keep our precious Jimmie in your prayers tomorrow. I will try and update as soon as I hear he is in recovery. Unfortunately I won't be able to be there or visit as me and my kids have the stomach flu.

Lord please bless this decision for Jimmie. Be with all of the doctors and nurses who are taking care of him tomorrow. Help everything to go smoothly and for Jimmie to recover quickly. Be with Rachael and Justin fill their hearts with peace.

Thank you for continuing to fight for our Jimmie Jim Jim.


P.S. They will be spending a couple of nights in the hospital. Both for Jimmie to recover and for g-tube training.

Friday, January 15, 2010

Wedding Weekend

Jimmie's uncle, Rachael's brother (and mine) is getting married tomorrow! Things are a bit crazy. As of right now Jimmie's g-tube surgery is still on for this Wednesday, Jan. 20th. Rachael said that Jimmie was not acting normal yesterday though. He was very fussy, didn't eat his solids as usual and didn't nap well. Pray that he is not getting sick. If he is coming down with something the surgery will be postponed.

Hopefully my next post will include pictures of Jimmie all dressed up for the wedding! (-:

Thank you for your prayers!


Monday, January 11, 2010

Dear Jimmie- Happy 11 Month Birthday

Dear Jimmie,

Happy 11 month birthday!

This is you right after you were born.

This is you at 1 month.

This is you at 2 months.

This is you at 3 months.

This is you at 4 months.

This is you at 5 months.

This is you at 6 months.

This is you at 7 months.

This is you at 8 months.

This you at 9 months.

This is you at 10 months.

And this is you today!

Look at how you have grown next to your Rottweiler Puppy!

Look how you've grown in your father's hands!

This month:

You have gained 15 ounces. You are 14lbs!

You are 27 inches long!

Your head circumference is 17 inches around!

You are doing great eating solids, but still are not taking in enough liquid by mouth. So you will be admitted to the hospital to have a little surgery to install a g-tube. This will be an easier and more comfortable way to tube feed you. Your surgery is scheduled for Jan. 20th. We are asking everyone to really ramp up their prayers and fight for you to do well. We want everything to go smoothly.

Your mommy is still on a VERY restricted diet right now to help with your food allergies and an over growth of yeast. She has stuck to it. She has amazing will power- your momma! I am in awe of her dedication to do everything to help you. I have also noticed your momma has had an easier time being steady with her outlook and emotions. An over growth of yeast can cause depression so perhaps this diet has contributed to your mommy feeling better. I'm sure just being at home has helped as well.

Physically you are doing great, above and beyond your developmental age of a little over 7 months. You are now crawling all over the place and pulling up to standing.

You are starting to practice letting go after you pull up. Your mommy and daddy have had to baby proof the house as you are in to EVERYTHING! You tried to eat a little piece of tissue paper on Christmas day and choked. The other day you got into some paper and your mommy was pretty sure you swallowed a little piece. Sure enough, she found it later in your diaper! Now that's nasty! Your mommy had a dream the other night you were walking. It won't be long now...

Puking has been a problem for you, but this month you've probably averaged only 1 big gusher a day. Your mommy started walking around with a bowel (instead of a towel) and you puke very neatly right into the bowel. She's measured it out a few times and it is usually around 2 or 3 ounces of puke, that is A LOT. We are grateful that it's been only once a day though.

You have 107 followers on your blog!

Your Faithfulness Video Montage has been viewed 6710 times. That's 684 views this month!

Your "Jimmie's Wonderful World" montage has been viewed 708 times! That's 32 times this month.

Your blog has been viewed 5,008 times this month for a total of 69, 277 hits! You have a lot of very cool people who love to check on your progress Jimmie.

This month you and your daddy stayed for 3 days at Grandpa and Grandma Gravitt's house while your mommy went to dear friend (faux Auntie) Amy's wedding in Vancouver Canada. You had a good time and although you missed your mommy you did very well with daddy, Grandpa and Grandma.

In the spirit of the holiday your mommy baked plates of yummy treats and you helped her deliver them to the neighbors.

You celebrated your first Christmas this month Jimmie. It was exciting. There was a big blizzard!

Your daddy slid into a ditch on the way home from the fire station Christmas morning. With the help of a nice neighbor daddy used his tractor to pull the truck out. You came over to my house to celebrate with your mommy's side of the family. After that you went over to Grandpa and Grandma Gravitt's house to celebrate with your daddy's side of the family. You got a crazy amount of toys, everyone was so generous.

Your mommy and daddy even got cards in the mail with money for you! Your first Christmas was blessed!

Your first New Years (and actually a lot of this month) your mommy has quarantined you at home because there has been a lot of sick germs going around. You did catch a cold virus. This is the third time you've been sick this cold and flu season, but it is the first time that it is not associated with an aggressive tube weaning attempt. All 3 times now though you have handled sickness amazingly well! Being stuck at home isn't too bad, actually it's pretty sweet. You take your naps well. The other day you fell asleep with your daddy on the couch.

A few days ago daddy was watching you while your mommy took a shower. You were playing in your airplane saucer and daddy got engrossed in what he was reading. He didn't notice you were getting sleepy. Your mommy came out all fresh and clean and saw you there like this:

She thought it was so cute and funny she took a picture! (-:

Saturday night your mommy went to your (soon to be) Aunt Rachel's bachelorette party and your daddy went to Uncle Eric's Bachelor party. So your Grandpa and Grandma Gravitt came all the way out to your house in Odessa to watch you for the evening. You did great. You LOVE Grandma and Grandpa!

Last year- January 6th 2009 was the first time we got to see you. That was the day of the big ultrasound that was supposed to reveal how you were growing and if you were healthy. At your sister Gracie’s ultrasound your mommy and daddy received devastating news. They were told that there was something terribly wrong, that Gracie was fatally sick. Your mommy and daddy decided (of course) to go forward with the pregnancy and try to be grateful for every day they had with her. Your mommy lived with Gracie kicking and moving inside her belly for a couple of weeks knowing that she would likely never get to hold her in her arms alive. Your Ma and Pa, Grandpa and Grandma Gravitt and me- Auntie Amber were all there when Gracie was born sleeping. She was beautiful! She was almost the same size that you were when you were born. She is buried at the feet of your Great Grandpa Jimmie Gravitt. That is who you are named after!

We were all very nervous about your ultrasound, Jimmie. Your mommy and daddy had all of us there with them- Ma and Pa, Grandpa and Grandma Gravitt and me- your Auntie Amber. The lights were turned off, the doctor put the ultrasound wand down on your mommy’s belly and there you were! You were beautiful just like Gracie, but you did not look sick. The doctor moved quickly and proclaimed everything perfect and there were tears all around. That was a great day Jimmie. We also found out you were a boy! For 6 days we rejoiced and talked of little else.

Then . . .

1 year ago tomorrow- Jan. 12th 2009 your mommy experienced some spotting after having not felt well for a couple of days. Stupidly I tried reassure her everything was fine, everyone did, even her doctor. But then, just be safe your mommy was examined. It was found she was dilating. They scheduled her for an appointment with a specialist the next day, but she ended up going to the hospital that night on a gut feeling that things may be getting worse. That night they told us we were losing you. They said you still looked wonderful and perfectly healthy, but that if you were born you would not have enough lung tissue to breathe. That was a very dark night Jimmie.

As we go through the next 4 weeks to your 1 year birthday we will be remembering…

You are truly a miracle Jimmie.

I will love you forever!
Auntie Amber