Tuesday, June 28, 2011

When Life Gets Wild

Several times over the three weeks of Ricki’s hospital stay, I mulled over in my mind what a friend once told me. This Rebbitzen (Rabbi’s wife), who had had a child seriously ill in the hospital, shared with me how she managed to keep her diet when under stress:
“When I had no control over anything around me, I got comfort from knowing that THIS one aspect of my life was still under my control.”
Sick children are only one type of stress. There are others; most of us have those people or situations that put us under stress. And whether we are dieting or not, we all have SOME aspect of our behavior we would crave to maintain.
And then along comes something unforeseen. Something that make life absolutely wild.
-We can’t control nature.
-We can’t control others.
-We can’t prevent all illness.

We CAN control ourselves.

Friday, June 24, 2011

Home at Last!

Ricki was discharged this afternoon! Good shabbas (and a nice weekend)everyone!

Thursday, June 23, 2011

Chocolate "Fix" and Feeling Like……./HOME!

(written Thursday in the hospital, but not posted then)
I have been, thank G-d, successfully keeping my diet* while here in the hospital with Ricki, as well as my minimum of 10,000 daily steps. In a way it was easier when Ricki was unconscious in ICU, as the staff basically only needed my help for her bath. Thus I was able to dash out for hour-long aerobic walks without repercussions.
However, now that she is awake, an ornery teenager (told you she was feeling more strength….), and likely to stick her nose into other patients' rooms, I basically can't leave the hospital. So I have been making do with short ten-minute aerobic walks in the hospital corridor, early in the morning. This morning when I explained my plan to the night nurse, reassuring her that I would pop back to the ward every 10 minutes, I added: "I am used to 60-90 minutes of aerobic walking daily. If I don't get in at LEAST a half hour I feel like 'death warmed over'." I know that this is an extreme expression, but it says how I feel quite succulently.

* After they rushed Ricki to ICU our first Friday here, fearing a lung collapse, I went down first chance to the hospital gift shop and bought myself a chocolate bar, (but at least it was a small one)(and it turned out at day's end, within my calorie count) . But it does show that I still have (and will probably always have to some degree) an inclination to use food as a "fix".

Soon We'll Have to Go to Misrad HaP'nim (the Interior Ministry)

Well, Ricki's IV didn't come out yesterday, which is good because they wanted to make further blood tests today. When I said a relieved "Well, at least she won't need to get stuck again…"' they hastened to inform me that the 5-day old IV would not allow a blood draw, and that they would need to stick her again.
Unfortunately, I was not "pushy" enough to insist that they try, and assuming that they knew best, I allowed them to look for a vein elsewhere. When they were unsuccessful, one nurse effectively drained stagnant blood off the IV connection, and managed to also get the 5cc's we needed for the tests. I DID insist that they take her TSH level as well, suspecting highly that her above-normal TSH levels from a test done a month ago were off due to her illness.
It is hard for me to be assertive; it is not my general nature. If I had been more assertive maybe I would have asked for X-rays earlier from Ricki's doctor, and perhaps this whole thing would have been averted (although I doubt it…).
However, one area where I am trying to make my opinion known is my protests against the extension of Ricki's hospitalization. When her O2 saturation levels last night were significantly better, I was upset when the need for further blood tests and another night of checking her oxygen saturation level resulted in postponing her discharge for "at least" another day. "Tell me, I quipped, do I need to go to the Misrad HaP'nim (interior ministry) to change my address to 'Shneider Hospital'"?
If for some reason they insist that she not be discharged tomorrow, I am going to try very hard to get a 30 hour "vacation" break for her for over Shabbat, as she really has little enough to do here on shabbas, and I can't imagine her doing anything other than moping in bed if we need to stay.

Wednesday, June 22, 2011

A Few Odds and Ends

First, an update: Ricki is finished with antibiotics and her IV will be coming out today. HOWEVER, she apparently has a VERY SLIGHT sleep apnea (caused by her narrow airways plus overweight), and so her O2 sat last night went down a few times last night (when she was sleeping on her back) for literally seconds. Unfortunately, once they went down to 80%, and THAT is enough for them to want to keep her in the hospital. Meanwhile, both of us are bored terribly, although right now a girl from sherut leumi (national service) is keeping her busy and occupied.

-One good thing came from this hospitalization. During the period that she was under complete sedation, Ricki lost 10 (!) kilos.

-I am in general very pleased with Shneider hospital. The staff is courteous, flexible, and communicate well. Almost all have spoken directly to Ricki without me needing to prompt them about this. Also (at least here on the regular ward), there is a large range of available activities to keep a child occupied.

Monday, June 20, 2011

Computers and Trivialities......

Anyone who knows about my nightly ritual of two to three hours online (catching up on email, writing the blog, reading, etc….) can imagine that the last two and a half weeks of being basically computer-less has been a real change for me. So imagine my pleasure when I discovered yesterday at 5:30 pm that on the regular ward (as opposed to the ICU) there is a computer room, open from 10:00 to 18:00.
"Ummm-" I asked the lady obviously in charge, while noting both adults and children in the room, "Is this room for patients?"
-"And for parents" she answered.
-"Good," I replied, "because after two and a half weeks in ICU I am in severe 'computer denial'"
-"But we close at 6:00"
-"I noticed, but that is OK….!"

So I hope (as from yesterday) to be online a bit daily. Hopefully we will be home sometime this week. Ricki still needs about three more days of intravenous antibiotics, but after that I assume we will be released, especially as she is progressing by leaps and bounds.
But of course,nothing is perfect. The computer here is SSSLLLOOOWW , and the one I am using currently has a mouse that I can't right-click on.
BUT WHY am I bitching?!? I should think that after a week in ICU I could be more forgiving of the trivialities of normal life.....

Sunday, June 19, 2011


First of all, a big thanks to all of you who have called (those who know me in real life), and those who have written here.
I have not been home for about a week now, so I have not had the chance to catch up. But on Wednesday Ricki was finely taken off the sedation and intubation. What followed was her experiencing (after 12 days of narcotics)withdrawal symptoms (diarrhea, shakes, agitation).
Yesterday she sat up for several hours, but still had withdrawal symptoms.
Today, FINALLY, she is feeling MUCH better . Her withdrawal symptoms are slight (they are gradually giving her reduced doses of a narcotic substitute). In addition, she is back to her normal self: eating, talking, asking questions, bitching, and complaining. She is walking small distances, although her strength is still very compromised.

Sunday, June 12, 2011

Hospital Diary, Abbreviated (Don’t have time to type a full version….)

Sunday, 29th of May- Ricki had been coughing for several days, but with no high temperatures. Yet, knowing that she had once (as a baby) had pneumonia with low fever, I took her to the doctor, just to be sure that nothing was “cooking”. The doctor heard nothing in her chest and saw nothing in her throat, and I returned home assured that it was just another one of her innumerable colds.

Wednesday, June 1st:
Ricki was still coughing, but more than that was not DOING anything. She would sit up sleeping (or half-sleeping) day and night. The doctor quickly sent me to the health fund to get a chest x-ray and blood saturation (“O2 sat” from here on) level. The O2 sat was 73, so we went dashing to the local hospital. They started intravenous antibiotics and an oxygen mask. At one point that evening (when her oxygen was removed for a few minutes) the O2 sat even hit a low of 60!

Thursday, June 2:
The local hospital noticed that there was fluid in Ricki’s lungs, so they sent us to a bigger hospital (Schneider), as it was evident that she would need a drainage tube. We arrived in the afternoon, and a drain was inserted, releasing a HALF LITER of fluid from her lungs. The whole night I was awake, fighting with Ricki not to remove her oxygen mask.

Early in the morning, Ricki’s drain somehow got pulled out (Ricki DID NOT do this), and we went running to ICU (me dialing on my cell phone in panic to family members, saying just “PRAY!!!!”), fearing a pulmonary collapse. However, thank G-d, no air had entered the pleural space. In ICU they decided that Ricki’s lung were not strong enough to take her fighting the oxygen, and they intubated and sedated her.

Saturday night:
Ricki’s pupils were reacting strangely to light, and were not the same size. Although, 98% sure that this was due to her sedation, the minute possibility of intracranial bleeding sits heavy on my thoughts.

Sunday, June 5th
Her pupils are reacting better, but her kidney function i9s not 100%. I am half-reassured by the staff who say that this happens often with long-term sedation, but nevertheless, a mother ALWAYS fears even the unlikely alternative explanations….

After large doses of Fusid (a diuretic), her kidney output is OK, but now the meds are making her blood pressure vacillate between 60/40 to over 200/ whatever. I feel that my daughter’s whole body is simply crashing down and I fight back the tears of my fears. However, the daily x-ray FINALLY shows a miniscule improvement.

Tuesday (date of my last update of the blog)
They insert an IV into her neck, as her arm IV is not flowing so well. They have to X-ray for this afterwards, so as she gets her third x-ray in 24 hours, I quip to the technician “Soon she’s going to be a ‘Glow-in-the-Dark’!” Only inside I am not laughing……

Ricki’s x-rays are slightly better, but her O2 sats are still (especially for someone getting oxygen non-stop) pretty low, around 90.

Her doctors are still worried about her kidneys, and in addition wonder if some heart condition has not arisen (and been the cause of all this…). Ultrasounds of the heart and of the kidneys are done, but both come back normal, thank G-d. I take a photograph of Ricki under sedation, so that when we DO get out of here, I can make a book for Ricki explaining where the last two weeks went to…..

Yesterday (SAT. June 11)
Ricki LOOKS better, and her O2 sat (when receiving oxygen) are a lovely 97-98. However, the x-rays show minimal improvement. General staff consensus is that she WILL beat this, but that we are in for a long haul…..

Today: Thanks to you all for your prayers and good wishes.....

Tuesday, June 7, 2011

Quick Update

I came home a few minutes ago, and will be here a few hours before walking back to the hospital (Schneider). Ricki has been in pretty precarious situation, but finally this morning after five days of IV antibiotics, her X ray was a BIT better. She is on breathing support and complete sedation. Please keep praying and thank you all.

Sunday, June 5, 2011

please pray

Ricki is in the hospital intensive care with severe pneumonia
( רינה בת רות)

Wednesday, June 1, 2011

Again, Blood Tests

Yesterday morning Ricki had blood tests done, and she behaved marveously! Now what makes this special is that they had to try THREE times until they got a vein, and she STILL cooperated!