Inspired By Gisele
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Urgent Prayer Needed

5/19/2014

5 Comments

 
Gisele is very ill right now. Please pray for miraculous healing by God's grace. Gisele's condition is grave right now. She's developed a bacterial lung infection and has required a significant amount of resperitory support the last few days. The doctors are telling Ron and Tiffany to stay very close by, so they're at the hospital and staying in or near her room. The doctors are extremely concerned about Gisele's survival at this point. Her resperitory support right now is at 74%. They can only go up to 100% before she's no longer able to breathe. 
 Please pray that this infection will clear up quickly, and for the Lord to give the doctors wisdom to know what to do for her exactly.

4:00 She's still on the same amount of support. She's sleeping good though. No  changes.
5 Comments

Mon, May 12, 2014

5/13/2014

3 Comments

 
I'm really sorry guys. I meant only immediate family can visit. She's still not in good enough shape for ALL our family to meet her. It'd be overwhelming for her, and too likely she would catch something and not be able to have the surgery when she needs it.

Gisele had to get reintubated and go back on the regular vent yesterday. She reaccumulated fluid around the upper right lung and overall she was not getting enough air. This is par for the course with all the fluid she gets unfortunately. She got a chest tube replaced today, so her lungs look much better. We might see her go back on the NIPPV in a few days. It just depends how everything goes with the lungs.
She slept all day so i didn't touch her until last night. I decided to steal a kiss and she gave a little side eye when i came up to her. I stole my kiss then she fell right back asleep. Her Mother's Day present to me :) I'll take what i can get!
3 Comments

Early Mother's Day: Tykei Met Gisele!

5/11/2014

7 Comments

 
She was half awake when Tykei went in, so I didn't have the heart to snap a photo of it. It was very likely she would've gotten pretty upset. I practically begged God that she wouldn't be upset because she had quite an ordeal yesterday. Every time she woke up she needed lots of consoling. God really answered my prayer. She was snuggled in her bed and sleeping so peacefully when we came in. Tykei went over to look at her for a few minutes. Her nurse, Jami, was updating me (whispering!) and I turned around to see her stirring. Tykei and Ron were just looking at her. He was bored and went to sit down. But!, after a few minutes I looked over and she was opening her eyes, so I called Tykei over. I told him to touch her palm so she'd grab his finger and she almost did but then she started falling back asleep. He was smiling. It was so sweet. I couldn't have asked for a better moment. Having Tykei meet her today was like Mother's Day for me. It was so special.

She's not on CPAP, but something called NIPPV. She got to go on this ventilator a few days ago. Still far better for her than being intubated. She's still adjusting to it, so yesterday was a pretty hard day for her. Her nurse, Lindsey, and I spent hours trying to console her so she wouldn't "fail" on this vent and have to get re-intubated. Loel was her RT. He was really helpful yesterday too. These people are such champs. I got just a glimpse of how hard their job can be. Today, the name of the game was keeping her asleep. I held her for the first time since early March. Granted, I have to hold her whole mattress because all her tubes must stay anchored to something, but she was really comfy. I really enjoyed having her so close. She had a much better day today.

So, the CT scan I mentioned on 4/30 was discussed by a group of doctors. They see what appears to be lung disease, only fixable by a drastic procedure. They plan to do it in about 10 days or so. I felt that God was leading me to bring attention to her heart, though nothing seemed wrong with it to me or anyone else. I thought I could be wrong, but why not try. I asked Dr. Ahmad for a cardiologist to check her out and he said he was already planning to have an ECG study of the heart. Only, because I was asking, he ordered it for the following day and asked this doctor to meet with me. It was done yesterday and revealed a mild abnormality, pericardial effusion (fluid around the heart). I feel the timing was imperative and not by chance. She's had ECGs before and this was not seen. It could come and go if her heart is overworked. I don't know because I'm not a cardiologist, but I'll be meeting with that doctor on Monday after he does a follow up ECG.

We're allowing our families to visit now. She's no less sick and no more strong immune-wise, but with her doctor nudging me we agreed it's time for family to visit. Very exciting.
5/12: I'm really sorry guys. I meant immediate family. She's still not in good enough shape for ALL our family to meet her.

I'll try to update Monday about my chat with the cardiologist. Prayer requests are for the doctors to find the real cause and solution. I hope it does not involve this drastic procedure they're planning to do. Please also pray for our family.
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    Medical History:

    Born 2/7/14 eight weeks early with a large SCT tumor (Sacrococcygeal Teratoma) and lymphangiectasia causing severe chylothorax (aka pleural effusion).

    She weighed about 4 lbs plus the 2.5 lb tumor.

    Major five hour surgery to remove it on 2/13. Had to be resuscitated for about 90 mins when surgery was almost complete. It's a miracle she survived, and did not have significant brain damage. 

    The chylothorax caused a weak immune system and she passed away from a pneumonia infection on 5/21/14.

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