A Stranger in My House

There are strangers in our house - almost 17 hours a day, 7 days a week.  You know that phrase "you can't live with 'em, you can't live without 'em"...well, it describes them perfectly.  I wish we could "live" without them, but at this point, I can't.  Don't get my wrong, most days I enjoy these strangers - they allow me the freedom to get things done without having to be a full-time mom and a full-time nurse to Toby...but some weeks are hard.  This week has been hard, so I had to make a list of grieving - grieving over for life not being normal.

Here are a few grievances this week:
1.  One nurse pointing out the white spots in my painting job - claiming in her note that she "knows I was looking for them" (I was not.)
2.  Little privacy
3.  Someone watching and critiquing almost every parenting decision I make or...don't make
4.  Related to 3 - but someone watching me lose my temper when all three boys are fighting (which happens to be frequent as of late - is it time for school to start again yet?), or Caris is whining and screaming (oh how I forgot what it was like to have a "normal" toddler) for two hours straight.
5.  Watching me lose my patience in the library today while Caris screams, Toby is purposely getting in the way of us trying to check out and just sitting over on that bench watching us...
6.  The conflicts they have with Toby - not giving him enough independence 
7.  Knowing when to step in and ask her to please do his care the way we do it so there won't be any conflicts
8.  Almost answering my front door when clearly I can reach it...
9.  Feeling helpless to change the situation
10.  Frustration because I don't have the energy or presence of mind to take care of all 4 kids by myself 24/7 and sometimes she is Toby's "stand-in" for myself...
11.  Not being able to cry and throw a tantrum because she's here..in the house...and at 4:30 p.m. when she leaves the urge to cry will be gone.


Okay - that sounds really negative, but this is the reality of our life.  Most weeks they are wonderful blessings, but some weeks they are frustrating annoyances.  I feel like a chicken penned in by the restrictions of their charting, med sheets...please can't I just raise my child the way I want to - can't we cath him in his wheelchair without worrying about your back issues?  It may well be time for a change - not sure what kind of change, but a change none-the-less.  I know that already my mind is working on and praying through a plan of care system to help Toby become more independent.  He is getting older and doesn't need to lay down in his bed for every medication given, trach care, and straight cathing.  It's time - praying that I have the courage and discipline to plan this system and implement it after our break away from all nursing care next week (much needed -  I know that God has orchestrated the timing of that).

I am going through a time of grieving again - grieving for what could have been, and for what has been lost - our life of "not normal"...I know God is there in the grief...and as my friend Jen reminded me through this scripture:
 
2 Corinthians 4:16-18 "Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us and eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Thank the Lord that this is temporal, and the hope of heaven is on the other side....trying to remember that these trsome days this "normal" seems too much to bear.  It oubles are momentary - just a moment in the light of eternity.  Trying to remember that others are dealing with far worse situations than myself, I can't complain...but it can be so difficult. 

Adjustments

We had some friends visit today, and ventured to take Toby from his room to the living room. He liked the swing - fell asleep in it!! We're still adjusting to having him home; things like how often to suction, the temperature of his heater so he doesn't get a lot of condensation in the vent tubing, etc. He has a small fever today, and has been wheezing a bit; We gave hime albuterol to help with this. Please pray that he doesn't have an infection. I don't want to go back to the hospital so quickly. Our night nurse is coming tonight for the first time. We're praying that we work well together with her. She would do 3 nights, and then another nurse we haven't met yet would do 2-3 nights.

Coordinating Care

The training went well yesterday on the ventilator, and today we have more training with the pulse oximeter and the suction machine. We also have another interview for a day nurse on Friday at 3:00 p.m. Toby is doing well - he has some redness around his g-tube site, so pray that it doesn't get infected. I am feeling a little bit overwhelmed right now as we look to next week; we're going to need friends to help take care of the boys, as we don't have any family that can come to help. Bruce and I will also need to take care of Toby for 24 hours on our own before he can be discharged, so we will do that over the weekend and into next week. They recommend doing it separately so we each feel comfortable with his care. I'm starting to feel tired, just tired - ready for the crazy schedule to be over. My brain hurts when I try to figure out how we're going to coordinate next week. God continues to tell me to trust, and let Him be in control!

Our friends Erika & Carl (who have helped us so much by scheduling our help with Toby at the hospital and updated the website :) have strep throat, so they are under the weather. Pray they heal quickly, and that their children will not get it.

Nursing Care and Waiting

Not much to say, Toby is doing really well. The tests for calcium in his urine came back fine. He weighed 8 lbs. 8 oz. and was close to 21 inches today. Our insurance approved 16 hours a day of nursing care, so now they are trying to find the nurses. If we had our equipment and nurses we could bring him home, it's just a matter of logistics now. I guess they have 2 or 3 other patients on trachs and vents that are also going home, which "clogs the system" if you will. Some days I really want him home, and other days I feel very overwhelmed with it...having a stranger in our home, helping us with Toby....Please continue to pray that we will have good nurses that will fit in with our family and be trustworthy. "Now to him that is able to do exceedingly abundantly above all that we ask or think according to the power that worketh in us. Unto him be glory in the church by Christ Jesus throughout all ages, world without end, Amen. (Ephesians 3:20-21)

Nursing Care and Surgery Update

He came out of surgery just fine, and is having a restful afternoon. Please pray that they will decide to feed him into his stomach, it will make life so much easier, and better for his comfort level. Also, the sleep study begins Thursday morning at 8:00 a.m. So far, Toby hasn't been great at sleeping, so pray that he will sleep well that day and be comfortable (without drugs to help), so they don't have to perform it again and prolong our hospital stay. Also, we're working with our case worker (we have one through the spina bifida/myelo clinic) to arrange nursing care of some type and the ordering of the supplies we will need. Pray that this goes smoothly, and that we will be able to have nursing help. Not only that, but we want qualified nurses that we will feel comfortable with. They will be working in our home. This is going to be very difficult for me, I'm a control freak! :) God is teaching me to let go, but I also want to have a balance.