Started Slow, Finished Strong!

Last night and early AM J did not sleep well. She was restless from about 2 AM on through the morning. Every 30 mins asking to be moved, or feeling itchy with the remnants of the rash. As the morning went on, she was real sluggish. She did not eat a good breakfast. Only a few cheerios, a few bites of a banana and some white grape juice. However, she did enjoy having a few visitors. The Youth Pastor and his wife from the church we are regularly attending...Oh, and papa smurf...(hehe, its an inside joke with the youth. ;)



After lunch she pepped up! She ate a great lunch...her whole grilled cheese sandwich, some baked chips, and sprite. Shortly thereafter Physical Therapy came.

We worked with a different therapist today and he really motivated her to do some things on her own. This gave her a lot of confidence to move forward. She didn't fall or get weak at all. The only complaint was a headache, and her scapula area behind her underarms are still hurting when she sits or stands. The Dr. ordered x-rays to check this area to make certain everything is alright there.

Here are a few photos from her PT session:

She walked around the nurses station which was up the hall and around in a circle and back to her room door:



After she walked, the therapist sat her upright in a wheelchair.
Here is the physical therapist talking with J about how she is feeling, and about attempting the stairs.



Here she is starting her first step up the stairs...hemovac and all! ;)



She got up 4 steps and down 4 steps. It was more painful than it looks, but she did really great!



Here hemovac is draining more today than usual. After this many days it is not usually draining as much, but she did have a very extensive surgery, so the surgeon was not as concerned about this. He is leaving it in another day to drain. She will have x-rays to check her upper back and shoulders either today or tomorrow. She is on the radiology schedule though.

Tomorrow Physical Therapy will work with her on sitting on a commode. They will determine then if she needs one of those taller commode chairs over the toilet.

We are praying every day for her to be stronger and stronger. We may be able to go home on Friday. Party time if she does!!! :)

Day Four Walk; Dressing Change

We've had a wonderful morning! Physical Therapy got J up this morning at about 9 am. Here are a few photos from her walk this morning.

She pushed herself up to sitting all on her own:



Once she sat up, she got a headache. She's been struggling with headaches off and on. The Dr. is keeping a watch and the nurse brought her some tylenol to take when she sat up. Here the physical therapist in the black shirt is doing some relaxation techniques to calm her down before her walk...this helped alleviate her headache too:



She calmed down and stood for her daily walk:



Starting her walk around the nurse station:



Guess who she ran into...Daddy who was working and stopped by to see how his little girl was doing. :-D



She made it further around the circle, but not all the way before having to put her in the rolling recliner.




After her walk, she drank some white grape juice and had her bath. Fresh as a daisy after her bath and change of gown. :) It felt good to her to get her hair washed!



WARNING: If you can't handle seeing J's incision, don't scroll past this sentence! :)



She had a dressing change to her incision area (for those who are medically minded or just plain curious;). So again...if you can't stomach it, don't scroll down. :) Her incision site is looking GREAT though! Thank you LORD and we give Him all the glory for her healing and speedy recovery.










Dressing change on her incision...she is even reacting a bit to the paper tapes. Not as bad as the latex adhesives though...



Dressing Change on her incision. Looking great!

A Good Night's Rest

A good night's rest is hard to come by while staying in the hospital, but last night the nurse allowed us to sleep uninterrupted. Woog and I got a good night's sleep. She only woke up at midnight for pain meds, anti-itch meds, and use of the bedpain.

At 3 am she woke up to use the bedpain, and complained of back pain. When the nurse came by (within 5 mins from buzzing her) she had already fallen back asleep, and so did I ...haha. So she never got that dose of pain meds.

When she woke up this morning at around 6 am, her pain level was about a level 6...on a scale of 1 being not much pain and 10 being worst pain. She had been having about 8-10 pain level in between pain meds, and it was good to know that she missed a dose and only had level 6 pain. At about 6 am she got a pain pill and anti itch pill.

David went home last night to get a good night's rest before working today. He arrived about 6:30am and brought us some breakfast. J doesn't feel like eating right now...(she ate a tiny triangle of a mini-pizza last night with some tea last night). This morning she has no appetite yet, but she has been drinking a lot of white grape juice.

Here is a photo from last night. After her two units of blood transfusion yesterday, she was able to have enough strength to stand and walk a few steps into the hallway. When she couldn't go anymore, we rolled the recliner out, and she sat up for awhile in the recliner.

You can tell she is very tired here...

Tired and Less Tolerating

A very tired and less tolerating woogie last night and this morning...



Last night was a hard night. We found a few things out this that could have made our lives a little easier tho.

First, they gave J a medication to help her to pass fluids out. Well, they did this knowing the catheter had been removed!!! It shouldn't have been according to her surgeon. J is not fully able to walk without a walker and assistance and had to pee quite frequently after that medicine.

David and I had to get her out of bed b/c we couldn't find a bed pan, and there was not time for her to wait. We almost hurt ourselves and her because we could not get the nurses in there and she was about to wet her bed. I got her to the commode, and in the process under her shoulder blade was hurt a bit. Now it is sore today. :( Once we got the bedpan, I learned how to roll her on it properly and have been the bedpan lady every since. :)

Throughout the night she became a little more whiney, which is not like her, and less patient with us and the nurses. She was still thankful in the end and very cooperative. It is just little things that she normally wasn't verbalizing, she began to do more verbalizing over. Rightly so...after being poked with a needle several times over b/c they could not find a vein...things like that were stressing her more than usual. She is just a little more short fused, and we are being so gentle with her about that because we can't imagine the pain she is going through.

Also, her back is in more pain and little by little the nurse has been decreasing the morphine. Today she is going to an oral pain med that hopefully will have a more lasting effect. The PCA pump just wouldn't hold off the pain for long.

Her rash seems to be much better...so Thank You Lord for those answered prayers!

After much prayer, we decided to go forward with the blood transfusion. The nurse will start this shortly.

We tried to hold off to see if her own system would replenish the blood loss, but her hermaticrit numbers kept going down. Right now it is about 19 and it should be 40+. Since her blood is low, she is very very weak. Due to this weakness she does not feel like eating, and also physical therapy could not get her up for her walk this morning.

Even though it appears we are going backwards with her healing, we trust that God is healing her in ways we do not see. Today just may be her "bad day", and I know she will have some ups and downs in her healing.

Please keep those prayers coming!

jenn

Rough Night in the PICU

J is in a lot of pain. The surgeon had injected her spine with a gel that contains something for pain, and as the hours go on, it will wear off and her pain will intensify. She is on morphine round the clock. Right now they are sitting her up for the first time, and this is huge for her!

She also ran a fever in the night, which isn't uncommon. Her surgeon said this morning when he came by that she reacted to several meds they used to put her to sleep. (we had told him about the rash on her legs, and he said with her it could be a number of things right now)

Her chest hurts when she breaths in deep. Therefore she tries to breath short and choppy to compensate, but this is not good for her to do. So we are working with her to make her cough and take deep breaths with this plastic breathing tube thingy. :) We have been suctioning a lot of mucus from her as she coughs it up. Her Dr. has ordered chest x-rays to check for a few things there.

After sitting her up she is now complaining a bit of a head ache. She also coughed up more mucus. It is so good to get this gunk out! They are going to allow her to have some water and juice this morning to see how she can tolerate it.

I'll post more photos a little later as she progresses. Thank you for your prayers!