Thursday, June 27, 2013

challenges and prayers

There has been some challenges at the hospital recently. Prayers are much appreciated. Its confusing why dome doctors say Bryce needs bipap and no other doctors are indicating he doesn't need. The transfer of care to the 6th floor was not very smooth. We moved up at 650, just 10 min before the shift change and the night nurse really had not much from the PICU in terms of care. 

Anyways, its nice to be out of the PICU. I met so many great folks  including our previous nurse Christy.  I spoke with United Health Case Manager Tuesday and they are working on sending us home with bipap. Also, finally my efforts with the state in getting accepted into the medically fragile program has worked. The case manager at the hospital was able to arrange a meeting and are now hopefully qualified once we discharge with the machines. This means I get home health nurses in more than just once in a while, we will have them in our home 7 days a week, every night. 

Its been great to have the county help us, so grateful to the county case manager, they brought us diapers, set us up on WICK and are helping overall with even more home health support.

Byrum home health company has been as been amazing sending us his tube feeding equipment and helping us get our nurses to train me on the tube feeds over the past month, and nurse Pam from Providence home health has also been amazing.

Early Intervention continues its therapies at home us through the summer. I am so happy that Bryce and I will be able to stay in our home for the next year as well. We are so blessed by St. Mathews community for its love and continued support. I think that my  neighbors, moms, and friends help Bryce and I so much and this has been such a gift and much needed break for me to start recouping a bit.

This hospital stay is a challenge. I'll keep everyone posted.

Jenni

Sunday, June 23, 2013

Bipap Part 2

touching flowers in children's garden
Playing with our friends!! Tx for visiting

waving hi to everyone in lobby
Bryce is doing really well on the bipap at night now that he is adjusting. It was a pretty simple adjustment from the respiratory therapists. Thank you my SMA mama friends. :)  He is very comfortable with settings now and I am very pleased with the wonderful folks at the hospital. The ICU is really terrific with care, although so many parents are struggling with more acute and sad issues, ours is more long term- yet respiratory is always a serious issue.  I was very sad the other night when a mom was crying so hard about her child. I just sang songs to Bryce during that time.  

Our friend Evan is just a few weeks younger
than Bryce.


We are able to go to the gardens and walk around downstairs. He loves to ride in the little wagons they have; he waves at everyone who passes by. I love his giggles and smiles.   We often go to the cafeteria to just people watch.  The new hospital is gorgeous They call it the Alpha Bird display.
The gardens are wonderful. I am so grateful to have this hospital here in Portland, what a great way to cheer us up, relax, get away from the sounds, the beeps, the constant people etc.  I can't believe we've been there since Thursday. Times flies, but it sure will be nice to come home.

In order to come home there are some obstacles to cross specifically regarding  home nursing.
 


I am well rested after my bipap, Ready
for a fun fun day mommy at the
garden, visiting people, crafts etc.
Each moment with Bryce is spectacular. The doctors and nurses always comment on how cute he is. How is does so well with his toys and with learning and being so sociable. I am delighted that he is so much like his mommy.  We love being social and its great our friends have been coming by to visit. 

The other day, while I was holding him, I was eating a bowl of macaroni noodles and Bryce reached his hand in my bowl and got a noodle and fed it to me. He laughed and I laughed - it was the cutest thing in the world.

More to come. Love all.










Sticker time with mommy



































 We are so happy to be out and about during the day. At night the picu helps us out. I have gotten lots of rest at night while Steve came to stay with him Friday night. I made food and brought it back to the hospital. We are so happy with the PICU. I am learning so much about bipap and glad he tolerates the treaments better. 






Friday, June 21, 2013

Bipap

"How do you do it Jenni?" my friend asks.  "how do you get up day after day and be such a great mom?"  My answer, "What keeps me going, is my love for my son;  when Bryce is gone someday, I can look back and say I did everything I could to make him the happiest and most loved child ever."

that being said, being alone at the hospital with the nurses learning to use bipap is very hard
Today is 9 months exactly since we got his diagnosis - it is true - I am much more 
at terms with this disease- yet moments like learning bipap is not easy
 

Last night watching Bryce cry and scream as they introduced us to the bipap was really hard. We took a break after awhile and the super great team coached me through the steps. In theory, this machine helps the child breath better especially when used at night; bipap will aid  breathing when he initiates, but if he doesn't it acts like a cpap and forces air into lungs - He tolerated it pretty well, but its a huge life-style change. Our pediatrician has been discussing this with us since the end of April - so its the most logical next step in the care plan.

I sat for a bit holding Bryce and thinking each night for the rest of his life being hooked up to a bipap doesn't really seem fair.  Caring for a child with SMA isn't really fair and really often times, life isn't always fair, It is what it is. In truth, I wouldn't wish this "SMA" on any parent.

I am not angry, though I have reasons to be - I was angry at this disease from Sept, till about January. Now, that I have my mom's group, a church that is super supportive, and great friends, coping is easier.  My friends tell me my greatest strength in life is  being positive, and forgiveness. There really is no other way to live life! Bryce is my joy! My life!

The past couple of weeks its been great to have so much love and support from friends;  have Kara on occasion come and stay with us.  Love to you all. Thanks St. Mathews and thanks Trish. Thanks neighbors, thanks Teresa, Claire, Martha!!  I am grateful  my smiling child with good happy energy. I am grateful for Laurel and Cher - their new mom energy keeps me so motivated.  Surprisingly,  Steve came last night  from 7 to 8 to play and be with Bryce- short visit, but I am always delighted to see Bryce have daddy time.

Thursday, June 20, 2013

20lbs!

Bryce is at 20 lbs. Yeah!. Now I can focus on adjusting the diet to maintaining with slight gain. Its a balance to learn the tricks and knowledge of his protein/fat/ intake and try to give him healthy foods.  Well, shakes are the way to go. Since we came home from hospital, Bryce doesn't really eat by mouth much anyways, so I can mix the kale, spinach, avocados together for a meal. My newest creation was pumpkin banana etc.

Despite how awesome Bryce is in everyway, taking off and putting on his sunglasses, talking to me more, saying yeah, playing with more toys, so interactive with people, waves hi and bye to our neighbors and friends - I am still concerned about the retraction when he breathes.

The extended tummy breathing and retraction along the his ribs extending to his back has gotten  worse since May - it could be a his new base line - I thought it could be a virus at first - but the strange breathing sound he made when he was born, its much louder and pronounced today. Medical doctors don't know a time line for Bryce, it could be months or years of a decline.  Evidence of other children's experiences are usually that kids are pretty resilient and can hold strong for a long time and then sometimes there could be a sudden decline usually brought on by a virus - It has been advised now that we don't offer food by mouth because his risk for aspiration is higher now that he is breathing harder.

We will see the doctor today and might be heading to hospital today and over the weekend to get him set up on night-time bi-pap and see how that works. I think this is the standard steps for our little man.  Love to all!!!

Saturday, June 15, 2013

Shriners and Newest News

We went to Shriners on Thursday for our check-in with our neurologist. Its time to start going every 3 months. They took and ex-ray of his spine and its time to get fitted for braces in August to keep him more upright when sitting. This will help reduce early scoliosis, but these kiddos usually are high risk for severe curvature of the spine. At this time, it was confirmed  as I suspected) his breathing muscles and retraction never fully recovered since our last hospital trip. Also he sounds junky much more. His tongue is vibrating more as well, and this of course is sad because it confirms his continued loss in neck control, eating and swallow muscles. Bryce is significantly stronger on the right side of his body compared to the left. I have to keep up on massage and activities to keep the left side moving as atrophy may beginning to set in on that side of the body. We will follow up with a Barium Swallow study at Legacy Emanuel soon.


Today and yesterday Bryce has been dropping to  95 on his pulse ox - throughout the day. Thus, I am now doing the cough machine 4 times a day. I will be seeing the pediatrician Monday for follow up. I have been instructed to go to ER if he drops to 93 consistently and doesn't come back up to 99-100.

I am watching him so carefully these days.  -  keeping the house dust free as much as I can.  His diet is pretty strict to help him stay regular also as straining to poo, really takes much energy and he isn't really strong enough to get it out. So this is another indication of degeneration, says the medical professionals

Again, please, come for play dates, call, email, keep in touch or just make comments on the blog to keep me feeling the love  - Despite recent changes,  I know my vibrant energy, amazing mother's instincts and passion for life is helping this kid tremendously-  Quality of life is what we are striving for -

I




Life Is What it Is

I am so sad  - a local SMA-type 1 family lost their baby girl to this unfair and cruel disease. I worry about  breathing and eating issues since we have been home from the hospital (end of April).

I am grateful for my friends and for Bryce being able to move his arms and legs like he does..  He is really good and waving hello and bye bye now. I love my baby boy so much.


Thank you all my friend and those from MOPS for helping me out the past couple of weeks. Thanks Kara, for staying over to feed Bryce so I could rest. Love all you guys so much for your support. Not many people seem to understand sleep deprivation. I think perhaps navy guys and I connect pretty well because the time on a boat is like half of what I have had to deal with in the past month and a half.  

Bryce eats by mouth now for fun, I work on it everyday.  He eats mainly by feeding tube now. Our life had changed so much with Bryce not eating by mouth. Its a shock, but its part of his illness and I will continue to care and love him all the same. I will keep offering food, licks and play time with different food; teaching others to help care for him also is a huge part of my job.