My Princess Danielle

buried by bunch of wires  finished hook up all the sensor. It was so uncomfortable how it suppose the person to fall asleep?? A yearly sleep test to carry out to ensure Danielle's breathing pressure support is well supported. That took us to spend a day at the sleep test centre at the last week of March . A remark made by the Sleep Technician was that Danielle was the most cooperative kid. A compliment but how much that I wish she could be less cooperative and able to put up a resistant......

  Just as we thought that things going to be smooth, the following day Danielle feeding tube balloon that hold the tube in place in her stomach burst. At the sametime, our van broke down just we preparing to brought to hospital. Thanks God that it didn't broke down during the way to hospital but broke down in the carpark after my wife went to fetch Beth after school. We managed to get hold of another transport to bring us to Hospital. We got a surgeon that did botok for Danielle to replace the feeding tube. Not the usual doctor , as this time we decided to try out another method to insert the feeding tube through radioscopy. It shorten the time of replacement , as it can be carry out without any general anaesthetic. We were able to discharge within the sameday as compare to previous method. After the procedure, we able to secure another transport to bring us back home. The following day, thinking that everything was fine. I was back to w...

Just as we thought this year we will go through December without having Danielle to pay a visit to hospital - We were wrong. This was happen when my helper went for her 2 weeks home leave to celebrate Christmas with her family. There two admission in total and for the first admission was after a day my helper went for her homeleave. Thought to just to find out what went wrong with Danielle for sudden reduce in her diaper change no. from 4 to 6 change a day to 1 a day. This really made us worry and bring her to A&E for a quick check and not expecting for admitting her. She spend 2 night in the hospital to discover that she was seriously dehyated. After that a ew feeding regime was given to make up to the lost of fluid. She was back home in time to celebrate Christmas. But still not completely in her usual self through out the week. On the 29th Dec sat night, Danielle suddenly had a desat to 85% and we could not got the s...

On last thursday afternoon, Danielle finally was well to be discharge from the hospital. After a night stay at home, we had to rush her to back to the hospital due to her GJ tubing burst. As it happened on friday and there a holiday coming up on Monday,there no doctor to carry out the procedure to replace the GJ tube under endoscopy. The doctor carry out the last insertion was out of town. We had to wait until tomorrow to carry out the insertion of the GJ tube. Until then Danielle, is on IV drip since friday night and a very slow feeding rate through the peg button. Yesterday, danielle secreation started to get thicken again and her trachy was again block. We are praying that Danielle protected against cross infection within the ward. Looking forward tomorrow for the procedure.

The Doctor increase the frequent of nebuliser treatment from 6hrly to 4hrly to loosen up the secreation that still present inside danielle lung, this really help to loosen up her secreation and Danielle's trach blockage over the weekend was much better managed. As the secreation was much loosen up, the frequent removal of the secreation had to increase too. This mean frequent suctioning session. As a result of it, Danielle was exhausted after each suctioning session. She also have frequent desat espiode as secreation tend to trap at her upper right loop lung. Her discharge plan have to postphone till end of this week until she more stablise and more managerable.

As much as we want her to be at home, she just still not ready to be discharge from the hospital yet. Her trachy have been constantly block, as result we have to change her trach from every 5 day to everyday. We also looking at changing it twice everyday since last evening we had another trachy blockage espiode. Trachy blockage is a danger issue as it block the only breathing passage to Danielle. She can be looking fine one moment and the next moment she can be very distress with breathing difficulty.

On Tuesday afternoon, Danielle was well to be move from ICU to the High Dependance ward. At the meantime, she have alot of secration in her nose and mouth. This mean frequent suctioning to be carry out. During this time, we had to learn again the CPR and trach management training. We are targetting next week Danielle to be discharge but still up to her whether is she well enough. As she already spent 3 week inside the ICU ward, she hardly got the chance to move her limb. So we brought the Gym to her and she enjoyed moving her leg.

After her surgery, with the Trach done and the tube being removed from Danielle mouth. She looks so difference. For some reason, her face was bloated during the period of intubation and this caused her not able to close her eye lid properly. But now when she asleep, her eye lid didn't open so wide. I'm happy for her as she able to move her jaw and mouth with ease, now without being restrain by the mask strip.

In the recent admission to the hospital that I notice Danielle sleep without closing her eye. It really sadden me to see how her weaken muscle has effect her eye lid. It had taken away her smile 1 years old. Everytime she admit to hospital, there will be some part of her muscle weaken further or lost. Tomorrow afternoon, Danielle is schedule to do her tracheotomy surgery. We hope through this, she will get better vision and much better management with her secretion issue.

Danielle is into her eigth day in the ICU. After the GJ tube success insertion, Doc progressively increase her feedrate and now she on her full feed of 50ml/hrs on continue feeding. Her feeding goes very well that everyday she will has 2 to 3 times of loose pass motion that worry us. Her secretion has become looser but still a lot which mean more frequent suctioning to be done. On coming wednesday, Danielle is schedule to do a tracheotomy surgery. Danielle need more airway support as we realise this time round she is much weaker. As parent, we know this will give Danielle a better quailty of life.

Danielle look so fraile and pale taken after a day in the ICU. She was being sedated to allow her to has much rest and also not to fight on the tubing that inserted into her airway( very discomfort) This taken on the fouth day in icu, she look much better. Today docter manage to use endoscopic to insert in the GJ tube into the Jejunal after the last two failed attempt to use the fluoroscopic method. Started small feeds after that.

Just a day discharge from the hospital for the carrying out the GJ tube insertion. Danielle found her back to the ICU with much critical condition. It started just right after her long await bath after spending few day in the hospital. Danielle just suddenly seen unwell and the next moment we started using ambubag to bag her. It come to the extend that our pulse oximeter couldn't detect her pulse and her sat was 30%. We try to did what we can until the ambulance arrive to bring Danielle to the nearest hospital. While in hospital, her condition was much control after the doctor intubated her but still she was still not out of danger. Later Danielle was transfer to another Hospital for better management of her condition. After the Doctor had assessed her, her condition was much stable and out of danger. They were also deciding whether to extubate her when Danielle condition look much better. Knowing that Danielle was much better, we decide to left for home to rest and come back the ...

Yesterday, Danielle went through a Barium tests . This test allow us to know how serious her reflux and whether her fundopilation where she did it two year ago to treat her reflux has it loosen up. The test turn out well and through it we know her fundopilation is still intact. Hence, we need not have to consider to redo her fundo. The next step is to schedule to replace her existing PEG to a GJ tube . The insertation has to be done over a ENT or radiograpy procedure. It been shedule next week to carry out the replacement. Later of the day, the doctor actually gave us the green light to discharge Danielle to allow us to manage her at home. Next week we'll come back again to do the GJ tube insertion. It follow by another 2 to 3 day stay to monitor her feeding.

Preparation for the transfer to another hospital. After 3 week of stay, Danielle is well to be transfer to another hospital for managing her there. I'm amaze by the profession of the hospital staff for carrying out the transfer. All along the way, Danielle are accompany by a doctor and two nurse. For this transfer, it involved quite a no. of people and here I'm actually more worry of the cost of the transportation than Danielle safety on the road. Upon reaching the hospital, Danielle is quick to adapt to the changes and amuse herself will the video watching. Not forgetting the balloon that giving by the nurse.

In midst of the stay, Danielle find her own way of entertaining herself. But it is the videoshow that keep her occupy most of the time.

Last wednesday, the doc decided to transfer her to the high dependency ward as she progress much better without close monitoring. But on the very day of Danielle was at the HD ward, she desat again when we were doing the suctioning on her. On that evening, again she desat that she required to be bagged. The doctor increase her bipap setting to 16 ipap / 10 epap from 14 / 9. From this setting, the following day her secration much more clearer and loose. She was much more alert and less tried. Yesterday, the doc reduces her bipap setting after she is seem to tolerate well at 15 /10 to 14 /9 . Afternoon she desat and the bipap setting is set back to 15 /10. This bipap setting is so far away from her home baseline of 10 / 5. Though we eager to bring her home, her main issue of this admission is still her reflux. We need to deal with this issue if not she will alway be at danger of the reflux. On coming monday, the surgon that operate on Danielle fundopilation will be back from leave and...

Last tuesday afternoon, Danielle suffer from a bad reflux where the milk that she takes in flow backward resulting in acute lungs collapse. It happened when both me and my wife was not around. This episode was so bad that we have to call in the emergency service to bring her to hospital as she require to be resuscitated. Upon reaching the hospital A&E service, she has to be intubated to keep her condition stablise. During the intubating process, danielle lost two teeth ( one came off and the other one is loose). What a painful process but it keep her condition stablise. On thursday afternoon, the doctor decide to extubate her and put her back to bipap.After the extubate she didn't seem to do well as she had few desat episode. The doctor said they might put her back the intubate. This morning, she responded well but her pulse rate still is high. Through out this, the church and our cell group are praying for Danielle. I can see how God supernatural healing upon Daniel...

After a good rest, Danielle is back to her own self exercising. I was worry that Danielle limb movement back track due to her hospital stay. Here the clip after coming back home last evening. Yesterday morning, there another vomiting episode that almost lengthen her stay again. Thanks God ,the vomiting episode did not lead to any serious issue but it did tired out Danielle and she spent the rest of the morning sleeping. Thanks for covering her in Prayer.

Just as we are expecting good new of Danielle to discharge from hospital. Danielle couldn't tolerated the early morning feeding schedule and the doctor decide to postphone her discharge another one more day. As much we highlighted our concern of her cross infection in the ward and we able to manage her well. The Doctor still want to keep another day and aleast seeing her able to tolerate her usual feed schedule to 80-90% level. Today feed schedule for Danielle was just 50% of her usual feeding schedule and the rate the doctor approach to bring up Danielle is very slow. One things i learn for this episode is that our kid when sick their tummy will just go haywire and take awhile for it to resume back it usual self. So far today feeding for Danielle turn out well as she can tolerate better and tomorrow we'll be stepping up her feeds. If everythings going well, we will be looking at her discharge on friday afternoon. Do pray for Danielle that she will not catches any infections an...

Last Sunday morning, Danielle had a desat that due to her vomiting. We managed to get her sat back to normal level and decide to make a trip to the hospital just to made sure Danielle did not had any lung collapse. While she being treated in the A&E, Danielle had another desat. Doctor decide to admitted her for futher monitoring Now we're in day3 and she doing okay .Doctor will let us know the next day if she okay to discharge from the hospital.