Pain

My pain has definitely gotten better. It is also different. The surface pain is infrequent, unless I'm laying directly on it, or chest tube sites here and there occasionally send a shout out. I am keenly aware of the subterranean pain, yeah, I'm the earth.

When the surgeons put the muscles together, apparently, the muscle above the cut doesn't lie flat again for around 3 months. It was disturbing enough to me to ask. Odd feeling and looking. I have so much numbness, around the cut, and across my ribs, under my left breast, including part of my breast on to the sternum. The nerve pain is not a painful constant as it once was, praise GOD! As my body is settling, there has been cessation of past intense pains, and awareness's of pinpointed pain. Under my rubs on my left side, I have a pretty constant sensation of a finger poking into my side. Similar to an intense gas pain. Since it is more toward my front a friend though it may be a phantom or referred pain. All the muscles are so interconnected, it may just be from being pulled and tugged by my belly and from being in motion. Who's to say.

I have seen a friend of mine who is a fabulous massage therapist, sounds luxurious, well, it is! She has a gift, my muscles were bunching up and I was getting a pinched nerve in my shoulder, left side above the cut. I could, and still can, feel the muscle acting separately from the bottom half, so I am more careful than before about moving. So while Camille, the massage friend, worked on that muscle, I felt a tingling sensation, and later when I touched that area, it was laying down flat! Camille has been such a blessing to me, my body and my mind while working through the healing. Her life is upside down now too. She had a leak under her sink which buckled her entire kitchen floor. Due to incompetency with the contractor sent out, only half the floor was taken out and dealt with and she now has mold problems. So reminiscent for me. She is living in a hotel until the mold can be resolved and this may entail an entire kitchen remodel at this point. Very sad since she just about 2 years ago put on beautiful, discontinued tile... Please pray for her. Spiritual health and physical health and mental health, this can be very taxing. She goes to Kingdom Hall which feeds her spirituality.

Not for everyone

If you don't want to hear about my fertility, skip the following paragraph.

I began my period the Sunday afternoon before my Monday surgery. Very disturbing to me, good thing I've had 3 babies already, as modesty was a luxury I was not able to afford. I warned you, not for the fainthearted. Today is beginning the 6th week since then. I am just into my fertitity yesterday and today. I find that fascinating. I do normally have long periods, but this takes the cake! May be you medical types and those otherwise gifted in these types of deductions are not surprised by this. A major shock to the body, staves off fertility. All I can say is fascinating, captivating, compelling, engrossing, gripping, and intriguing. That's for you cerebral types:) Now I have only had 2 periods so far since my fertility returned after having Silas (brag, brag...), so who knows the impact this has. I'm thinking minimal, although Silas has picked up his nursing since I've been back, I just don't think he's getting much.

Tearful Tuesday

It's past now, but theres a tale to tell. Tuesday was such difficult and tear-filled day. You may know this already, but I realized on Tuesday that my body is very messed up! As I mentioned before, I had a problem with one of my chest tube sites again! Different one this time, like it matters! It opened up and Caleb said,"It looks like we could just pull it open and look into your body". Not good. It had some puss, going downhill. A friend came over, and got me hydrogen peroxiding it. It looks better now, but not great yet.

I've been taking percacet, and Monday night I had a massage from a fabulous body-worker friend of mine. I left feeling clear. Can't describe it shortly better than that. I didn't take percacet on Monday and didn't need to. Now, being of sound mind, and body, realizing I couldn't move the way I have been without damaging my body, I became paralized. I didn't feed my kids, they began fighting, including one throwing a stool an another! Thankfully, Grammie pushed her plans to take the kids and I spent the entire day crying off and mostly on. I have NEVER cried like this in my life. Even in marriage hell, I cried and was done with it.

Taking this percacet has numbed my emotions and given me a false sence of well being. I'm laughing, isn't this why people take drugs? I can really get that now! I am taking it some nights still. I feel survivable during the day, and some nights start to feel really sore and some sharp pains. I fully expected to be in good enough shape to help out last week with the kids Jungle Kamp, and this weekend to be able so sit long enough for all day seminars. I'm really hitting the reality wall hard. Like I said, I'm just starting to get it that my body is so damaged.

The Lord is good, faithfull and takes care of me, not the way I would have asked of course, but I don't have all the puzzle peices nor the perspective and wisdom of the God of the Universe. I had no one lined up to help me this week, because Lawrence needed to start going to work, so I figured I should be able to do that by now on my own, so I decided I would do it alone.

Funny, I could have gone a lifetime without learning to ask for help while desperate and truely vulnerable. I wanted to wait until I was composed before asking people for help this week, but that time never came, and I realized I could not wait or I'd have a rerun of this day tomorrow. I called and left quivering messages for different friends. For most of you who know me, I don't cry, I don't ask for help and I've been pretty stoic in my life in general, PRIDEFUL. Well, I've been asking the Lord to take me to the next level, and he is faithful.

While in the 3rd or 4th round crying in the shower, I was beggning for deliverance from the Lord and I realized he was giving me the opportunity to be delivered through personal growth. He could just fix me, the situation, whatever, but how would that help me in the long run? I had to do my part and call people and ask for help. As one of my friends said, who wasn't available, the worst that will happen is someone saying what she said to me,"Sorry, I wish I could, but I'm not available".

Happily, my Wednesday was much better. Night and day. I had a friend and her kids over for the first part of the day, well until 330p really. The kids all played, my friend, Janet declared war on the ants in the freezer/fridge, yes you read correctly :(

At one point my kids began melting down, I was just saying, ok I need to feed them NOW, and Janet said, oh, my husband is hear with food. It doesn't get better than that! Well, ok, if I could eat the food myself... After slaving in the kitchen for hours, Janet vacuumed, played tug-of-war with an area rug, unfortunately, the rug won, but all is clean and vacuumed again.

Then the next shift came over till Lawrence came home. I'm also realizing this process has been isolating for me, not good for anyone, but I'm an extravert and grow like a flower with companionship. Now it's time to push for human contact.

Thanks for your continued prayers. I still desperately need them. Now more than ever. This is by far the hardest phase of this experience for me.

Thomas & Friends™ Lead Poisoning Hazard

http://www.cpsc.gov/cpscpub/prerel/prhtml07/07212.html

snopes info - http://www.snopes.com/info/recalls.asp

Last night Lawrence told me about a recall on Thomas the Tank engine. I'm pretty upset. Seems lead testing should be part of normal quality control procedures for a company of this reputation, charging what they charge! Check this link, it's mostly red and yellow painted things. We have 3 of the items.

I am not usually an alarmist, and you have never received one of these mass emails from me regarding some 'big scare’. I am very concerned about the Thomas the Tank engine recall and want to be sure everyone I know who has the toys knows about this lead poisoning hazard. We have 3 of the recalled items. I bought these for my boys when Silas was born, the most oral baby ever.

Silas has been the mouthiest baby I’ve had, everything has gone in! He has eaten inordinate amounts of dirt and we’ve mostly written it off to being so oral. I was going to have him tested for lead about a year/6 months ago because he ate so much dirt. He used to pick up glods of dirt and take bites out of them, like it was food, and not just when people were watching! Our doc said his chance for lead exposure wasn’t very likely since our house was built in 1991. But eating so much organic material can be a sign of Pica, to help an upset stomach feel better? I never did get him tested, I was waiting and seeing if the dirt eating would let up. It has slowed down to an occasional dessert of dirt, rather than a mainstay.

Back to Normal?

Skip this paragraph if you don't like reading about wounds....argh.....

Got the call from a resident surgeon late last night. She said it's normal to have wounds get soft, moist then back to dry. It does seem to be forming a scab today. Filling in the open space, large scar coming there now. I may put some butterfly bandages on it myself to close it for a smaller less Frankenstein scar if I can get around to that soon. Ironic that I'm now calling and concerned over changes to these wounds. Used to wait until I knew for sure something was very wrong and not going away before involving doctors.

So I'm several hours in on my own today. The house didn't burn down.....Caleb is making pancakes, on the stove, and the T.V. has been on for more than the recomended 1 hour......But we're all alive here. I haven't had the dreaded poopy diaper yet. That's the one I'm not sure how I'm going to deal with yet.

Why must I be continually reminded how tenuous life is? My front chest tube site is questionable right now. It was dry and closed, and now is open and not dry, not leaking or anything, but now I am worried. It does hurt, wait and see, and lots of antibiotic ointment for now. I just left a message for the on call doc to see at what point I should pay attention, and what if any actions need to happen. I keep thinking and saying the worst is behind me and it's just cake and healing now, but I get scared with things like this now.

Lawrence goes back to work tomorrow. I'm anxious about this also. The way it is when you've had a baby, and your husband goes back to work and you are left with the kids. I'm hopeful that it will just get back to normal, pre-flight jitters.

Please pray not only for my anxious heart to be helped in peace by God, but for my health to go to a new normal, better than before, ASAP!

Also please pray for my cousin Todd. He's in Africa right now, very sick, probably with Malaria. He is on an IV with a coctail of malaria drugs. He seemed to respond to this at last report. Praying he is healed soon.

X-Ray and Doc report

I went to my first follow-up appt yesterday Friday. Had an X-Ray. There is some fluid in the plural cavity(not inside lungs), and my doc is ok with the amount. Doesn't want to see more than that. I can feel the fluid when I'm laying down, this surprised her. She also said she's never had anyone in pain this long......lucky me.

I'm still on narcotics, waiting long periods of time in between and taking lower doses, but, still on them. So if I'm in a conversation with you and I forget what we're talking about midsentance, don't think I'm not paying attention, just on drugs. Please pray I will be able to get enough pain releif with tylenol and ibuprofin so I can stop taking the percacet. I took extra strength tylenol yesterday to see if I was ready for the switch, unfortunately, it wasn't strong enough, and I have to wait the 4 hours before I can take the strong stuff, since it also has tylenol in it.

My kids had a wonderful time at Jungle Kamp this week. Thank you all who participated in making this happen, and for those that made it happen for my kids, driving them to/from. Lawrence, Lori. This was a biggie, very fun thing for them. a BIG THANK YOU to Grammie for all the child care she has been doing. She took Silas every morning and then the boys when they came back from Kamp at 1p, till Lawrence got home.

I do know this phase of life is in the finnishing phase, just lingering on a bit. I will be keeping my own kids next week, so a bit scary, since I won't be able to check out and nap any time I want. A bit afraid of changing a poopy diaper:-0 Lots of stretching, moving about for that.

Come hang out with us next week! Play in our yard, we've got a fun pool, sprinklers.

Turned a corner yesterday. I am not feeling the pain as intensely as I was. I didn't take any percacet during the night. I did take some before going to bed. Usually I wake up after 5 hours feeling very stiff, and a little torqued. I still have nerve pain, this is a strange sensation accross my back and front. Similar to a sunburn, but different.

------a few hours later---------

I was getting a glimpse at the future. Had some pain develope during the morning. It's ok, now I know I will be getting back to normal pretty soon. Thanks for your continued prayers for healing.

Also, please keep praying for harmony for the boys. Things seem to be getting more normal with me being home. Some signs shoing up at night, but with time, things will go back to a normal pace, better than before! One cool side effect of the pain and possibly the medication, I can't yell.... I am learning to speak in a quiet tone and seeing how the boys react. Silas especially doesn't like a raised voice even. Learning:) I'm seeing that it is mostly just getting attention that I have yelled in the past. Thinking of possible solution for that. Now you all get a real personal glimpse into my home.

Prayer really works. Things are coming around for our family. The kids have been going to Jungle Kamp at our church this week. They were excited about bringing money for offering because it is going toward buying a cow for a family in India, for milk, and when it has a calf, they will share or be able to sell it to help another family. How wonderful to have kids who care about another family enough to be excited to bring the money they have. Caleb earns a penney per weed with a root, and he brought his $$ for the offering. Today however, he's very excited about earning more money so he can slime Miss Connie and Pastor Paul.

I'm feeling better, that's nice, very vigilent with the fat though which is a challenge. Rather just skip eating...but the docs and a couple of people have warned against not getting the food and protien I need. I had a scare for the last 3 days. I ate 'lean' ground turkey. Didn't read the label. Not the same as chicken breasts. I could feel the gurgling as I breathed. Just a small amount, but, I freaked out in the middle of the night last night, thinking about another stay in the hospital........leaving Silas and the other boys again... asking for even more help from you all, and those that don't read the blog too.

But, God is so good, I don't feel the gurgling sensation any longer. I have my follow-up appointment to remove stitches, have an X-ray, talk about the pathology report.

For next week, I need people to come over and hang out with us. I'm not yet totally autonomous, although I am able to do much more than before. If you are available to hang out with us, play in the pool(large extreemly fun kiddie pool). Morning shift, afternoon shift, let me know:) Gotta let Lawrence get back to work full time. His boss has been extremely accomodating. Such a blessing. Need to respect and give Lawrence back to Air Systems.

ok pain med filled- thank you Target

And no, they didn't see a missing date! Time to move to mailed monthly regular drugs anyway. This was the push I needed to get that finished.

I'm eating some protien, and feeling a little bit better, also not stressed about not making it through tonight at home.

As usual, please keep the prayers flowing. Please add my sanity to the list. Really.

whine alert

I am getting so frustrated with pain, not being able to do my own laundry, clean my own house, take care of my own kids, feed us all.

I knew I was getting low on pain meds this weekend, but the docs office is closed till monday. I called in the afternoon today, Monday, and because of the medication being 'a controled substance' you have to have a paper perscription. Big neusance, Lawrence drives from San Jose to San Francisco to pick up by 5p. Annoying, but since I didn't count my meds on Friday, something that needed to be done. Well, they forgot to put the date on the perscription in the rush, and now, at 830p we get a call from the pharmacy, we can't fill this percription without a date.......... I don't have enough meds to last the night, and am in pain, already not feeling well in general, and now Lawrence is out trying to find a pharmacy to fill this percription at 845p! He has my medical card and ID so hopefully this can be done. The kids haven't eaten, I made some spagetti, but they aren't here yet to eat, they have to get up for cool Jungle Kamp tomorrow, a good thing, but all very frustrating.

I can't remember if I've already complained about a severely low-fat diet I'm on to heal my gap/whole in my Lymphatic system. The thoracic part of the lyphatic system carries the triglycerides, so to heal it, you give it a break, no fat. The only fat I can eat is from the 5oz meat I'm allowed each day. Even lean chicken, fish etc.. carries fat. I thought I knew a lot about nutrition, but as with all things in life, the more you learn, the more you find out you don't know much.

Enough grumping for now. Please keep the prayers coming, or going. I think I may be low on getting my sunshine.

I'm back.........Again!

Thank you for your prayers. Monday was a dark day for me. The thought of another thoracotamy looming was terrible. God got me through moment by moment that day. It was a day of dependence on God. Thankfully, Gods grace carried me through, His strength is made perfect in my weakness. I was at my weakest and I claimed that verse, and received comfort from God.

Good news is I have a diagnosis. I have/had Castlemans Disease. It is a very rare medical condition. Lawrence googled it and found that there have been only 200 cases on record. The tumor was a lymph node that got very BIG. This is difficult to diagnose via biopsy, and needs to be removed to be diagnosed. So that’s where we are. There are 2 types of Castlemans, the more common one is the one I had, 1 tumor, you remove it and should be ok. Some doctors follow it up with radiation, but my doctor doesn’t think that is necessary. She will be taking my case before the tumor board. They meet on Fridays, so don’t know which Friday she will be able to meet with them. The other, more rare form of Castlemans disease, is multiple, systemic tumors along the lymphatic system. I don’t have any other tumors, had a pet-scan to verify this a month ago.

So back to why I was re-admitted. I was leaking lymphatic fluid profusely from one of the closed chest tube sites. I filled several towels, including a full size bath towel. The lymphatic system carries triglicerides from your stomach to your liver. Because the lymph node was removed, not all of the channels were clamped(they are translucent and not easily seen), and the doc didn’t know she was removing a lymph node. So this led to an internal leak. I didn’t feel like eating in the hospital, so I ate very little, which means the lymph system wasn’t carrying much. When I came home I began to eat more, and after a week build up, I sprung a leak. I was having a difficult time getting a breath on Saturday for about a 5 hour period, then it went away.

What this means now: I am on a severly low fat diet. The only fat I'm allowed is 5oz of meat a day, which can be interchanged with an egg for 1oz of meat. This includes all animal meats, even fish. I will be on this diet for 2 weeks and then a more normal low fat diet. So, absolutely no Oreo therapy allowed! I'm doing ok. Ihave pain in my insision and chest tube areas still, but it is managable. I'm off the medication that gave me amnesia, so I just may remember conversations now:)

Thank you for your prayers, please do not tire of doing good, and continue your prayers for healing and harmony, peace in our family.

Pray for miracle that the hole heals in the next 3 days.

The doctors believe there is a hole on the lymph, which most likely got nick during the surgery.

Today Tuesday, they plan to insert a chest tube to discharge the fluid from the inside and to give the inner lining a chance to heal.

Heidi is on NPO - which mean no food and no drink for the next three days and hopefully the lymph will heal itself. The goal is hopefully the hole in the lymph will patch itself. She can only drink when she is taking medicine.

If it does not heal itself in 3 days, then Dr. Kukreja will perform another full open surgery, search for the hole then patch it. That is, if she can find the hole. The problem is, it is very difficult to see the pipeline of lymph because they are almost invisible to see.

Dr. Kukreja believes she can find the hole with 50% certainly. She said in Boston, there is this procedure where they inject dye through the foot so the doctors get a better chance of finidng the hole on the lymph. The procedure is very painful and she does not think it is practice at UCSF.

Please pray for miracle that the hole heal itself in the next three days.
-Aquino Family

Heidi is leaking at her left side and is back at UCSF - Please Pray.

Friends and familys,
Heidi is leaking fluid at her left side, and when she called UCSF Sunday evening, they told her to go back to the hospital.

We got to the hospital about 1 am in the morning. The attending doctor, Dr. Yang don't know what is leaking out, so they are doing several test. The leak is like a watery drip on her side, and the doctor/nurse placed a plastic bag to catch the leak to measure how much it is leaking.

Her surgeon Dr. Jasleen Kukreja was phone called at her home (about 2am)and informed by Dr. Yang of the situation.

The doctors think there are (3) possibilities: lung, lymph vessel or pus. If pus then Heidi might be infected, but they doubt it because she has no fever. Whatever it is, they started several culture to find out. The culture result won't be known for about 2 days. In the mean time, if the doctors think it is an infection, then they would probably start her right away with an array of antibiotic (shut gun approach) non-specific bug killing process. Only when they get the culture results, then they could start to kill the bug with a specifc antibiotic.

They did an xray and the xray look the same as when she was discharge from the hospital last Monday and the leaking fluid should be clear if it is from the lung. But the fluid look like 1% milk, not so white and is watery.

If it is coming from the lymph then the leaking fluid would have a higher viscosity (not watery).

Dr. Kukreja has other morning duties at other UCSF sites and she won't be able to see Heidi until afternoon. Heidi is forbidden to drink or eat anything in case the doctors will need to operate on her again.

Please pray for Heidi that the doctors are able to determine quickly where the fluid is coming from or causing it. And that the doctors come up with the best solution for it and not so painful for Heidi. And most of all, pray for fast recovery.

Thank you for your prayers.
The Aquino Boys.

Oh, i ask the doctor if its Silas' milk (breast milk), and he said maybe - not sure.

A healing itch?

I'm itching like crazy! My nerve pain covers to my left side, stomach, and part of my chest and back. All signs of proper healing but I'm feeling a little crazy from the itching and healing. Had to tell someone!

I finally am on top of the pain today, and they pull the happy feeling right out from under me, and say it's time to start weaning. Well, it is better than when I was supposed to begin weaning last week and wasn't in control of the pain yet. I just can't wait till I feel normal and pain free again.

Friday I did ask for the pathology report to be faxed to me. Since I don't have it yet, my assumption is that I'll get it when I see my doctor on Friday. I will of course post the results as soon as I know anything. My appointment is 10a, Friday 13July.

Reflecting on my experience, I think I am not as queasy and uneasy with needles anymore. Every morning, I was woken by a blood draw. Quite an experience being in the hospital for 8 days. I was definitely the spring chicken in the Cardiac / Thorasic recovery floor. There were a few other youngsters like myself, or younger, but most had gray hair and their ages were 80+. My 3rd room-mate was 87 or so, and was a fun person. She had checked in the night before for a similar procedure. She had lung cancer and was having a lobe removed, although her surgery was going to be thoroscopic, so faster healing. So cool you can be healed by 1 surgery.

I'll share more reflections, and bore you with a blow by blow when I'm sober. I'm high on percacet right now, though sadly, and gladly I am starting to wean.

High as a kite

Hello everyone. I'm happy to be back home. Weird to be home and not myself. The kids just kept playing. My being home was almost incidental. The pain is unfortunately not at bay, but better. I talked to a nurse today about my med and pain situation. I have to wean off a couple of the pain meds already. It is a challenge, but I know this will be a memory soon. I'm having quite a bit of nerve pain, which is good in the theoretical sence, it means I'm healing, the preverbial itch under the band-aid. The nurse has me upping my nerve pain medication, so I am hopeful this will allow for more comfort and longer sleep at night. Please continue to pray for sleep and pain abatement.

It is interesting to be on narcotics. I think I present fairly normal, however, my sister called while on her way to my house today and I said cool, did we pre-arrange this? I didn't even remember we had talked about it 2x! Thems the breaks. I'll take the drugs and the airheaded self over more pain at this point. I am getting very tired of it though. Can't believe sometimes that it's dragging on so long.

Moving right along, my kids are doing well. I am so blessed, my heart overflows with gratitude and thanks for all that mom, freinds, and spiritual family are doing. It is a wonderful thing to be taken such good care of. Therese is running my daily schedule, many of you have been called by her and have so graciously been bringing meals and taking the kids out for hours to have fun and give Lawrence and my mom, Grammie a break. Grammie has been working so hard, doing laundry and household chores, on top of being available to take care of kids in between times.

Chris took my kids from 10 or 11a to 9p!!!! the other day. She lost track of time and called to see if she could keep them longer to feed them! To lose track of time when watching someones kids, wow! How wonderful to be so blessed! I can ramble on an on right now, I'm high from the percacet's.

All of the perscriptions are not pain meds, some are anti-inflamatorie- can't think clearly, other unmentionables and of course pain meds. Lots of meds! I have a little yellow notebook where I keep track of what to take when and how many hours apart. (4) percacet 8a . That's for clarity. It's really quite overwhelming to be sent home with a ton of meds and not being clear headed. I carry it around, or have it near, so I can keep up with what med is coming up. Sometimes, I'm counting the minutes till the next dose. Can't wait till this phase of healing is over!

Please keep praying. And thank you for your prayers. Very cliche but they work! Interesting to get a peek into the life of a junkie. No wonder it's hard to tell if someone is on drugs, they seem pretty normal, just a little off.

Last Entry: the boys mama is home

Late this afternoon, Heidi was release from her hospital room. She had three roommates while recovering.

The nurse release her with (10) different types of pain medication. Yes that is ten. The nurse even said to make sure we don't lose some of the presciption because they are worth at least $300 dollars each in the street of San Francisco.

Heidi was feeling good last Friday that they removed the epidural and catheter. However, within about an hour she started to feel the surge of pain again. So on Saturday and Sunday, the pain doctors tried to figure out the best way for Heidi to manage her pain.

By Monday morning, the pain doctors finally came up with the correct combintaion of ten different types of oral medication for managing the pain.

When I came for Heidi at 3:30pm, Heidi was asleep. The nurse had a little difficulty waking her up, so she lowered the one of the medicine from 1,500 mg down to 1,000 mg (i think that is metric for milligram).

Wells that all folks, that is my last log entry for Heidi.

Last notes: Thank you to Grammie for watching the three boys when i went to work and while i visited Heidi. And while Heidi was gone, Silas grew up and is now able to open our fence's gate and he whispers to my ear.

And thank you to the folks whose been bringing dinners and for the folks who watch the three boys (and gave grammie a short break), and thank you to the ladies that clean our home.

Last log entry for Heidi,
Lawrence